#1643 Grand Rounds: Stephen E. Gitelman, MD

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

A conversation with Dr. Steve Gittleman on predicting, preventing, and treating type 1 diabetes—covering genetics, environmental triggers, screening, and emerging therapies like teplizumab to delay or alter disease progression.

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

Dr Steve Gittleman 0:13
I'm Dr Steve Gittleman. I direct the children's Diabetes Program at the University of California at San Francisco. In this role, I help manage patients in the clinic, and then I spend a lot of my time in the research world trying to better understand why type one happens, and how we can alter that natural course of progression to clinical diabetes.

Scott Benner 0:36
My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at Juicebox podcast.com up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at Juicebox podcast.com Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org, check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes touched by type one.org I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days you want the ever since CGM, ever since cgm.com/juicebox one year, one CGM. Today's episode is sponsored by the tandem mobi system with control iq plus technology, if you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone you're looking for tandems, newest pump and algorithm. Use my link to support the podcast tandem diabetes.com/juicebox, check it out.

Dr Steve Gittleman 2:33
I'm Dr Steve get I direct the children's Diabetes Program at the University of California at San Francisco. In this role, I help manage patients in the clinic, and then I spend a lot of my time in the research world trying to better understand why type one happens and how we can alter that natural course of progression to clinical diabetes.

Scott Benner 2:54
Awesome. I would like to understand a little bit about your background first, so I'm going to take you back a little farther than people usually do when you're in high school. What do you think you think you want to be when

Dr Steve Gittleman 3:02
you grow up? Well, yeah, I think the seeds for me were planted even earlier. I say that just because of issues within my family, you know, I think a lot of people that end up in a diabetes career have both personal and professional motivators. So for me, what I heard about as a child growing up was my maternal grandfather, and he developed type one shortly after the discovery of insulin. He was kind of held out in our family as just, you know, one of those miracle experiences he lived many decades. His Life wasn't easy. I heard how he had to take a train from upstate New York to Boston to pick up his regular allotments of insulin, and how my grandmother modified her recipes to make them more appropriate for someone with diabetes. So I heard about his life then I watched as others on both sides of my family developed issues, either with type one or other autoimmune issues. So you know, I saw firsthand how that impacted their lives. My next intersection with the whole challenge was my father happened to work as an adult kidney specialist at the University of North Carolina, where I went to medical school, and I was very surprised as a medical student, to see young adults who are his patients who had kidney failure. You know, I used to nudge him. Why aren't your patients doing better? This was, you know, a different era before we really understood how important it was to keep blood sugars in a near target range to prevent these things. But he basically gave me a nudge and just said, you know, why don't you try and help the field? You know? Why? Why is this happening? Can't we better manage diabetes? I think you could prevent all this if you really knew what was going on. So I think. That was, that was the gauntlet, uh, threw it down to me at an early, early

Scott Benner 5:04
age. And so does that lead you to endocrinology? Then that idea?

Dr Steve Gittleman 5:10
Yeah, so in high school, you know, I was interested in science and biology and intrigued by what he was doing as a physician scientist, I think the two things I kept in the back of my mind as I was heading off to college was, gosh, I think I like biology. Probably want to go into medicine, but, man, I really enjoy summer camp. I want to make sure I can stay involved as a camp counselor and be outside and play. So with those two primary goals, you know, frame shifting down many years of training. You know, diabetes, you know there was that personal connection and just scientific curiosity, yeah, but then I spend a lot of my time at diabetes camp every summer, and so somehow, I guess those high school goals came to pass.

Scott Benner 5:59
Excellent. Hey, what other autoimmune issues run through your family?

Dr Steve Gittleman 6:04
Yeah, it turns out I have a grandparent with rheumatoid arthritis. There's thyroid issues, others with type one. I think those are the main, main issues of note.

Scott Benner 6:15
And how about for yourself, or any of your FA Do you have children?

Dr Steve Gittleman 6:19
Maybe. Yeah, yeah. So I do not have type one, and I always preface this by saying yet, because, you know, I have those genetic underpinnings, and this can happen at any age, less likely as you get older, I have three children, and they've all been screened for their risk repeatedly over time and have tested negative to date, but you know, we continue to watch them closely over time.

Scott Benner 6:46
Sure. Well, I'll knock on something for you. Thank you. Yeah, yeah, no, of course. So Okay, right now today, you're a practicing physician, but you also consider yourself, just like your father, you're also involved in research, so I feel like maybe we want to talk more about the research aspect of what you're doing first, how does that begin? And how long ago did you start? I don't know if you have a lab or what you do, but I'd like to understand how you're set up and what your goals are.

Dr Steve Gittleman 7:12
Yeah, along the way in my training, I did do a lot of laboratory work, and it was not in diabetes, specifically, a great experience. I think I got fairly deep into that and missed, you know, more personal connections with patients. So I shifted gears and moved from that lab based existence to more clinical research. You know, I think the question that many of us working in type one have continued to ask over time is, why can't we screen and predict who's at risk and stop this from happening? Yeah, I think it's an exciting time. It's, you know, it's very natural question to ask. You would think we would have answered this many decades ago. You know, I think we're making nice inroads in at least the prediction side, and then if you can find people at risk, Boy, wouldn't it be nice if we could delay or prevent diabetes from happening? So I think finally, we have at least one therapy that's that's doing that.

Speaker 1 8:16
Which do you think is, is the answer in terms of therapies, or

Scott Benner 8:21
you said you think you have a therapy. I mean, there's a, I mean, there's a couple of them out there, right? But is there one that you that you like the best

Dr Steve Gittleman 8:29
when we talk about altering the course of type one? I think there been, you know, you can intervene, really, in three different arenas. And you probably talk about these widely on your your podcast. You could come in before clinical disease try and screen and predict and try and prevent it from happening. You could come in shortly after diagnosis and try and extend what we call the honeymoon phase. At the time of diagnosis, you may have up to 40% of your insulin producing beta cells. Beta cells still present. So extending that honeymoon can make a big difference clinically. And then for people with longer standing type one, you know, I think the question is, why can't we replace the missing beta cells? So it's kind of, you know, those, those three main places to intervene, prevention, preservation, replacement. So if I was going to make a t shirt for my research team, I think that would be the that would be the tagline, yeah, yeah, that's the mantra. You know, I don't work much on the replacement side of things. I follow very closely. I think that's very exciting. But I do think a lot of what we learn on the prevention and preservation side may apply to the replacement side. So I think there's nice conversation between investigators that work across those three phases to inform and support and guide each other.

Scott Benner 9:55
How do you describe what you're most focused on? Which of those three phases? Interests you the most, and where are you having the most success?

Dr Steve Gittleman 10:04
Yeah, yeah. So, you know, as a pediatrician, I think a lot of our focus is on prevention. Prevention trials are different, difficult to conduct, and so what's happened over time is a lot of times our proven ground is come in with something shortly after diagnosis to try and extend the honeymoon. And if it's safe and effective there, it's something that we can consider taking into the at risk population and maybe think about using in replacement strategies.

Scott Benner 10:37
Okay, let me make sure I understand. So if you had a mechanism to extend the honeymoon and it was safe, then maybe you could use it prophylactically in high risk people. And I guess you'd just have to, if they didn't get type one, you'd say, I guess it worked. The entire thing, as you're talking about it, is so predicated on finding these people, getting them to be interested in helping over long term, not being able to really promise them anything that part of it seems incredibly frustrating to me, even as you're just starting to as you're starting to explain it, can you talk about how difficult it is to find the people to even work with?

Dr Steve Gittleman 11:15
Yeah, I think that's a great question. So it kind of takes us back to, you know, screening strategies, which we've been actively working on around the world for several decades now. And you know our initial focus has been on families where someone already has type one, because we know just from studying family history that they're 10 to 15 fold higher risk. The unaffected family members are 10 to 15 fold higher risk for eventually developing type one compared to the general population. You know, we've looked to try and better understand genetics. The genetics of type one is very complicated. A lot of it is driven by genes that determine self versus non self, but there are over 50 other regions in the genome that are involved. So genetics alone is tricky to use as a predictor. In and of itself, we think that your risk for developing type one is driven by a combination of both genetics and environmental triggers. It's even harder to prove genetic or environmental triggers. You know, we all face such a myriad of different things, I think we have some good leads there, and we could talk more about that. But practically speaking, I think one of the big breakthroughs was screening for an immune measure called Auto antibodies. And we don't think the auto antibodies are causing the destruction of the beta cells, but we think that they're a signal that the immune system has been turned on and is actively targeting the beta cells, and so we can measure now up to five of these different markers in the bloodstream. And I think what we've learned is if you have two or more of these markers, eventually you're very likely to develop type one diabetes. So the first part of our predictive algorithm is really looking at that immune marker. The other piece that we use is, if you're moving down a pathway towards type one, sooner or later, you'd expect your metabolism to start to shift. And so usually this is not something someone's going to notice clinically, you know, with the classic signs and symptoms of nuance of diabetes, but there's subtle increases in blood sugar. And so we can do a stress test on the pancreas, the beta cell, and do an oral glucose tolerance test, much as much like what is done during pregnancy to screen for diabetes, and so we can start to see mildly elevated blood sugars. That tell us, not only is the immune system turned on, but the pancreas is starting to be challenged and not functioning fully normally. And so, you know, we now break these, these steps into what we call stages. So stage one, two or more auto antibodies, we now call that the onset of type one. Biochemically, blood sugars are normal. You're asymptomatic, but eventually we think you'll move to clinical diabetes and need insulin. Stage two is the combination of the immunologic activation, the antibodies, plus the subtle change in blood sugars, we call that stage two, and then stage three is what we used to call nuance at type one. That's when your blood sugars are elevated. You need to initiate supplemental insulin therapy, but you still have those that under current of beta cell function.

Scott Benner 14:40
What are some of the environmental triggers? I don't want to get too far away from that. What do you think are maybe some of the ones that you, I don't know, believe in the most after the research, let's talk about the tandem mobi insulin pump from today's sponsor, tandem diabetes care, their newest algorithm control, IQ. Technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juicebox, the tandem mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus. When you think of a CGM and all the good that it brings in your life, is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox podcast is sponsored by the Eversense 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one CGM.

Dr Steve Gittleman 17:01
I think this is, you know, one very challenging aspect of all the work we do. And I should say that all this work is funded, you know, in in larger research teams, the National Institutes of Health has been a tremendous funder of this breakthrough, T 1d has been very helpful their international organizations in Europe and Australia all trying to better understand this. And you know, we compare notes and work closely together. There have been lots of interesting studies into this question, and a lot of it's based on epidemiologic observations. So for instance, a lot of interest in early feeding practice. Can breastfeeding prevent the development of type one? Can avoidance of cow's milk formulas prevent the development of diabetes? You know, we see these interesting observations and studies and populations that support these notions, but we don't really know for sure, unless we do kind of a classical clinical trial, you know, what we'd call a randomized perspective, placebo controlled study to answer it. And for the milk question, it was a really nice study called trigger that was conducted in patients in many places in the world. It didn't work. And so I think the prevailing thought is, well, there are two prevailing thoughts. You know, I think one is maybe the beta cell just isn't a very robust cell and doesn't handle stress very well. So maybe it's a series of different challenges over time, whether it's different feeding issues, whether it's different viral exposures over time, just some of that non specific inflammation and challenge to the beta cell. It catches up to it over time, and it just can't withstand those, those challenges, the inflammation and and other aspects, and it fades, and you don't have enough there to sustain your blood sugar control, right? I think the other issue that's been at the forefront of thought for quite a while is maybe, you know, there's a lot of lot of interesting observations that suggest virus is a culprit and different infections. You know, most of the infections have been dropping over time because of vaccination, but viruses have been a challenge. Highest risk for for type one is as you move away from the equator towards the poles. If you move from a region of low risk, say, you know Cairo to Helsinki in Finland, which is the highest risk in the world, you assume that risk in the region you've moved to, there's a seasonality to type one presentations. There's kind of clusters outbreaks, and certain locales where we see type one. So it starts to suggest, you know, infection and maybe virus is part of this. And there are studies suggesting that particular viruses may. A way to home to and invade the beta cell itself and cause destruction. One amazing development will be if we can define particular virus or types of viruses that do this and then vaccinate against them early in life, and just at a very early stage, eliminate risk for progression to type. One sure, a lot of work going on in this area. So I'm, I'm not doing it full justice, because it's, it's complicated, and it's, it's actively evolving, but, but I think you have the gist of it.

Scott Benner 20:32
No, I do. My most of my daughter had Hand, Foot Mouth before she was diagnosed, and at some point, Francisco Leon from prevention bio, who, I guess they eventually sold their their drug off to Sanofi, right? It's to miss a Plov now. Is that what it is? When he was on the podcast, he talked about his idea of like, I'd love to be able to vaccinate for Coxsackie, because I think if we stop kids from getting Coxsackie, we might stop kids from getting type one diabetes. And he seemed very passionate about that, that specific idea, I feel like that's what you're saying here too. Is that there's it's so interesting, like, as you move away from the poles, you said, away from the equator, excuse me, towards the poles. How many people come on here, and while they're telling their story, I don't think it's of any surprise. Many people are very captured with the desire to understand why they or their child got type one. And you know, as they're speaking, you can almost after you do it long enough, you can almost just jump to it and go, Hey, are you know? Are you English or you know, is your background? Are you Scottish? Are you from this part of the country where, you know, like you you're talking to somebody from America, and you realize, like, they're from Minnesota, and their their lineage goes right back over to, you know, Scandinavian countries. And there's a lot of through lines there that I've seen just from talking to people over and over again. It made me feel like kind of going back to my first question about, like, how do you possibly get all these people to do this work. I was thinking like, Would it be easier to just give everyone a survey and ask them all the things you need to know? And at the end, the last question is, do you have type one diabetes? Because that I keep thinking like, I mean, how old are you, sir, 6767 you've been at this a while. I imagine I have indeed, yes, yeah. How do we take what's in your head, like, your lifetime worth of experience and layered on top of somebody else's so that we can continue to, you know, to move forward and not just, like, not have the things that you know, those little aha moments that you've had? How do we not let them disappear so that we can actually get to an answer? I mean, that's a big question, but,

Dr Steve Gittleman 22:42
yeah, you asked a few questions, important questions in there, you know, I think part of this is, you know, the scientific process, you know, we study, we publish, we critique, we're intellectually honest with each other. We try and build on, you know, any positive study to move things forward, we try and learn from anything that didn't work. If it didn't work, why didn't it work? You know, we just stand on the shoulders of the people that came before us. So it's, you know, I think there, there's some issues in life, some diseases that are just simpler and, you know, we have the answer and we're on to other things. You know, gosh, penicillin will treat strep throat. You know, a week or two of treatment, you don't look back. Type One is a complicated issue. You know, simplest terms, it's selective destruction of a single cell type. But the why of it? You know, it's not a single answer. There's not a single gene, not a single environmental trigger, likely, not a single aspect of the immune system. But it's this complex stew of things that we have to disentangle to move things forward.

Scott Benner 23:55
Because if you consider, I mean, everything you've brought up, and even everything that I've seen over the years, like, if it's, you know, there's some environmental and some, you know, I mean, I can't tell you how many people have come on here and said, like, I had a car accident, then I got type one diabetes, or, like, you know, like I had a very traumatic event, somebody died, and then it happened. There's some people who think that trauma started. I'm pretty certain my daughter's Coxsackie is the impetus. But of course, if you look back through my my wife's family, there's a ton of autoimmune stuff with those people. They're, you know, English and Irish lineage. There's things that now, in hindsight, I can say like, Oh, that makes sense. My wife has thyroid issues. So does my son. I'm adopted, so we don't have any idea of, like, what I bring to the mix, right? But I can tell you that I've been anemic through my life, like there's sometimes you start interviewing people, talk to a mom, and then she tells you about her family's background and the husband's family background. And I just initially think, like, oh my god, I bet you three of her kids are gonna have an autoimmune issue. And an hour later into the conversation, they all do. And I just want, I don't know if I've talked myself out of my question. I. Don't know. Like, I feel like everything that's being gathered it all makes a ton of sense, but I see what you're saying that. Like, why would like, I guess the question would be, like, why, if I have a family of six people and they all are living in the same house and all experience the same death of a person, or we're in the same car accident, why does one of them get type one and not the other? Like, that's the real question, right? Like, it's why you and not me.

Dr Steve Gittleman 25:23
Yeah, yeah. I mean, I, I'm the father of twins. They're not identical twins. But if you study identical twins, that's in some ways, kind of ground zero for genetics. You know, if twin a has type one diabetes, what happens to identical twin B and the classic observations would say, Well, maybe 30 to 50% of those unaffected twins will eventually develop type one. It turns out, if we follow the unaffected twin long enough, like you know, 567, decades, eventually, twin B does develop type one. It is intriguing that the timing is very different. The nature is very different from one individual to another. And, you know, although twins grow up in a similar environment, they diverge their genetics. You know, it's kind of a misnomer that all aspects of the genome are the same between identical twins. You know, the immune system has very complex rearrangements over time. But it just tells you, you know, genetics alone isn't the answer, and we just need to know more about those environmental triggers. You know, there's kind of parallel worlds that we look constantly across that, you know other other complex diseases in in our human experience that are this tricky interplay between genetics environmental triggers, right? So I think some of the best studies that are being done, such as the the environmental determinants of diabetes and youth, the Teddy network, some of the efforts in Scandinavia, they're trying prospectively in life, to collect all biologic samples from a given individual at different periods over time and careful histories and surveys and things, and then go back and try and link infections and life experiences to changes in the immune response and changes in metabolism and risk for progression to type one. So I think the right stays are being done. It just takes a lot of people and careful analysis and reassessment over time to put the pieces together. I'll make one other comment is, you know, I think a lot of the focus is you're kind of alluding to is people of Northern European ancestry, type one happens, you know, in almost any race ethnicity, it's increasing where it's being studied. The incidence is increasing in different places around the world. In the US, it's increasing, probably at a higher rate in those of Latino ancestry, we're just starting to understand some of the issues with type one, for instance, in Africa, where we know clinically that people look like they have type one with loss of beta cells, but the process may be very different. We talk about type one is, if it's one entity, but we're starting to realize that, you know, maybe there's subtypes. Maybe there's, you know, different pathways, different triggers, different processes, that result in this n clinical picture where, gosh, you don't have enough beta cell function and you have to take supplemental insulin. Yeah, probably the more I talk, the grayer it all sounds.

Scott Benner 28:43
This is where the conversation is really though, because if I stop and look back at all the different things that I've spoken to people about, people who come on and talk about, I don't know, they had hives, and then they took an injectable and the hives went away. Like, isn't there something to learn from that? Like, isn't there something to learn from how GLP medications are impacting people right now, you know, and their inflammation, for example, is there not something to be learned from isn't all of this going to, in the end, be somehow connected? I think this podcast lets me have these kind of big conversations we've I obviously have no specific training. I don't understand any of this. I'm just the person in the middle who, luckily or unluckily, gets to have a lot of conversations with a lot of people with autoimmune issues. And like, you know, one that I bring up a lot that started to shock me, but stopped shocking me now is the amount of people who will say that they have a bipolar person in their family line, like the amount of people I talk to have type one diabetes, who are like, Oh, my uncle's bipolar, my aunt's bipolar, my grandmother was bipolar. Like, it's overwhelming. How many people bring that up? It's overwhelming. How many people with type one diabetes talk about anxiety in their families? This many people can't have anxiety. Like, and is that all inflammation related? Like, are all these things somehow tangentially to. Touching each other, and is the key to understanding the big picture, understanding little bits of all of the pictures. I keep sitting here thinking like, you know, I had this conversation with this researcher once who he thought that covid was great for research because he said he thought it forced labs to start sharing with each other more. And then I had another person come in here recently who said that they think that AI is going to be one of the ways that they can get through all this information, maybe more judiciously otherwise. Aren't you just waiting for some happy accident? Do you know what I mean for you know what I'm saying?

Dr Steve Gittleman 30:37
Yeah, yeah, you again, raised a couple of very interesting issues for me to comment on. Please take the guest prerogative and selectively and address one or two of them, because they're all all great conversation points that we could spend a lot of please. Please. You know, how do you pull all these different observations together, or any kind of unifying hypotheses that we could use and capitalize on and think about intervening to alter the course. So, you know, these are hard hypotheses to prove and act on, but I'll just, I'll throw two of them out there. One is obesity and the accelerator hypothesis, and the other is what's called the hygiene hypothesis. And you know, these probably have been talked about in other podcasts, and I'll just try and succinctly mention them, and then I want to talk some about things that have been successful, and they give us hope that we can alter the course of this, even if we don't fully have all the pieces of the puzzle. So the accelerated hypothesis suggests that, gosh, if you're overweight or obese, that kind of starts to look like risk for type two. Your pancreas has to work harder, secrete more insulin. You become resistant to insulin, and in fact, you know those at risk and progressing to type one, there's a high chance in this day and age that you will be overweight or obese. So maybe that is an additional stress and strain in someone who's at risk for progressing. They might progress faster to stage three or nuance at diabetes. So you would think, you know, maybe if we treated obesity earlier in the in the course of life, maybe we could lower the risk. We haven't done that study but, but it is a way forward the hygiene hypothesis. It'll take me a minute to set this one up, please. I'll just tell you that full family disclosure, my wife is a children's infectious disease specialist, and of course, the goal in her world is, let's minimize risk for infection, and so in a world now where we're very careful with antibiotic use and Purell and avoiding infections and exposures and using vaccines widely, it's great for minimizing risk for infection, And I am not in any way bashing vaccines in the discussion today. I don't think they have any role in initiating autoimmunity, so I'll just get that out there. But maybe by lowering risk for infection, we're increasing risk for autoimmunity, and that maybe some of those early exposures and infections that were common in prior decades would were actually lowering risk for autoimmunity. So the tension in our family is, you know, if food falls on the floor, I'm happy for the kids to pick it up and eat it, and she's horrified. And I'm being a little silly here, but you get the idea that maybe in a more sterile world, we've increased our risk for autoimmunity. The risk is increasing, not just for type one, but for all autoimmune conditions.

Scott Benner 33:48
Yeah, what's that? George Carlin bit, where he says, When he grew up, they used to swim in the in the East River, and everybody was healthy as a horse, and that river was disgusting. I take your point. So as we get more I guess, adept at keeping everything clean. We're not giving our bodies opportunities to have small, little, conquerable infections and germs that it can learn how to deal with. And therefore, you've sheltered your immune system, and then all of a sudden, you slam it with something, and it doesn't know how to fight back at all, and boom. You think the beta cells. It's po I think I heard you say earlier, maybe the beta cells are just a little more easier to damage, maybe, or less able to like, I don't know. I know. I forget how you put it exactly, but it's, it's odd, because Steve, I feel like it stuck with me, but then all your words left me. But what was it you said that it's possible the beta cells are be less resilient. Less resilient, okay,

Dr Steve Gittleman 34:41
you cut your skin. Gosh, it'll repair beautifully many times over and On you go. But maybe beta cells, they don't regenerate very well. They don't handle stress very well. They're just not a very robust, resilient cell type, yeah, yeah, but I don't want to leave people. Are feeling hopeless, because we actually have had some very exciting results with interventions. If you want, I can train, you know, give the view from 10,000 feet on where those stand and where I see that going.

Scott Benner 35:14
Yeah, no, well, first of all, I don't see your conversation is feeling sad at all. I It's incredibly interesting. I'm again, Steve, you don't know me. I barely graduated from high school. I have no I did not go to college, and yet, like just making this podcast, I think, has allowed me to just hear people's stories in a different way, maybe because I don't have any preconceived notions, or I don't really even have the ability to talk down to anybody. I don't have enough education to even do that. The odd little things that I've seen along the way, I'll give you one from my personal experience, I'm maybe two years into using a GLP medication that I only used for weight. That's why I was using it. I've lost 70 pounds. Wow. I weigh about 166 pounds today. I think I started at 236 Wow. Congratulations. Thank you very much. I had been anemic a lot of my life. No bleeding, no like, I just anemic, and it caught up to me in my adult years, to the point where I would have to get iron infusions just to, like, exist, because my ferritin would go down into single digits sometimes, and I couldn't function. I have not needed an iron infusion since I started using a GLP medication, and my ferritin stays up now. Now simple like, guess maybe my digestion works better, and my food is actually having time to be processed differently, and I'm actually getting the iron out of my food and I wasn't before. I don't know if that's the reason. That's my guess, but what an interesting thing to learn. You know what I mean, like an unexpected thing to learn. Like, how crazy is it about how many women who couldn't get pregnant their whole lives, who believe they have PCOS, for example, went on a GLP and then got pregnant? Those are the little places where I think, like, don't ignore what that means around inflammation, or what it could possibly mean around inflammation. There's this documentary, I think it's just on Netflix. I have no idea how valuable it is or not, but there's this person in it that tells this story. It's about gut biome, the documentary, Ah, yep. And she talks about how she took, you know, the details of it, I think probably would skeeve people out, right? But she took, you know, she she seeded her gut with somebody else's fecal matter. I don't know the technical aspects of how this works, but she did it you're doing well, no, thank you. She did it from either a boyfriend or a brother, and she developed the person's acne. So she had never had acne her entire life. She seated herself with this person's and then the person has acne, and she got acne, so she thought, well, I'll change to the other person. She's a change to the brother, or change to the boyfriend. I forget what the order was. And then that person is depressed. And she'd never had depression in her life, but developed depression when she did it. And I thought, like, that's like, worth remembering. Like, I don't know what to make of that. Do you understand? Like, I'd be a terrible scientist, Steve. I'm already bored with the idea. I'm like, That's a great idea. Someone should do something with that. But like, I wouldn't be good at digging through the details of it, but I think somewhere between ladies with PCOS having kids, and guys not being anemic anymore, and this gut seeding, and people with type one, and I feel like glps being used with people with type one are going to teach us a lot over the next decade. And I'm so excited to find out what those things are going to be. You know, injectables for allergies and like, what are they quelling in the immune system? Like, what is there to take out of that? Like, it feels to me like there are little bits of all these things that will someday, I don't know. I feel like someday you're gonna load all these into your personal computer, Steve, and ask it to make sense of all of it. It's gonna spit the answer back out. And I just, I wonder how long that's gonna take, but I'm excited for people like you to figure it out. I want you. Are you paying attention to AI, like, or is that like, yeah,

Dr Steve Gittleman 39:07
yeah. No, absolutely, absolutely. And you know, there is so much information that we're collecting, but it is hard to know how to best sift through it, and the data sets get larger and larger for all this. So I agree with everything you're saying. It kind of feels like, boy, they're important breadcrumbs in and around us. How what we follow, and you know we gonna Is there a meaningful end along that path?

Scott Benner 39:35
Yes. So yeah, go ahead. Your 10,000 foot view of it, please. Yeah.

Dr Steve Gittleman 39:40
You know, we talked about being able to screen and predict, I will tell you, up until 2018 there had been a number of very well conducted prevention trials and those at risk for type one, you know, they were supported by these epidemiologic observations. We've been talking about, the interventions were tested in animal models of type one of which, they're not too many and too many good ones, unfortunately and oftentimes. There's a pilot study that suggested, hey, I think this is going to work. The long and short of all those studies up until that point was we could identify people at risk. None of the treatments worked. We were frustrated, the field basically shifted to the idea that, why don't we focus on people with new onset type one, where we again, we could see if we could find something safe and effective there, and if it worked, then we could bring that into prevention. Okay, I will tell you, as we're talking today, there are actually 11 different therapies that have extended the honeymoon now, and I'm talking about larger, what we call phase two or higher level studies, placebo controlled, well powered, you know, with a reasonable number of people, one of those has been well evaluated at stage two. So moving from people with nuance of diabetes, where it extended the honeymoon safe and effective, to looking at people at high risk at stage two, and that's the drug you mentioned earlier, called teplizumab, that's the first prevention trial that worked. We can talk through the details. We probably don't have time for all

Scott Benner 41:21
that, but Steve, first of all, I make a podcast. I have nothing but time. We're only on your schedule. Don't worry about that. But the second thing here is, I'm going to ask you a question if you're not comfortable answering. Because I'm going to ask you to just kind of guess. But I have been wondering for years why Sanofi would pay $3 billion for a drug that is so hard to administer, and I can only come up with that. They must feel like something else is going to come from it at some point. Is that a fair guess on my point? Or do you have a thought about it? That's a lot of money to buy a drug? Yeah.

Dr Steve Gittleman 41:55
I mean, I'm not a business person. I'm a Yeah. But you know, in the history of man, the only other approved therapy for type one is insulin, you know, that's replacing the missing component, the missing hormone. It's not getting it. The underlying root cause of the problem teplicit Mab is, you know, a type of immune therapy called a monoclonal antibody. It targets T cells, which we think is a very important part of that immune infiltration and destruction of beta cells. So it's getting more at the root cause of things. So, you know, I think, you know, we've been tremendously excited that this, after years of development, it's getting a toehold, and it's basically, first of all, I think it's showing we know what we're doing here. Here is a therapy that can delay, if not, you know, prevent, until the end of time, the development type one, it doesn't work for everybody. You've mentioned the challenges in giving the medication, and there are a number of questions we can ask based on the success, but, you know, I think we have to mark the moment and realize, wow, so we can do this. Where shall I go with the discussion from here? Let me talk a little bit about some of the aspects of duplicit map and where I see it going and and then kind of bigger picture, about therapies. Thank you. So just to kind of summarize what success looks like at this point in time. So the studies to date, you know, it was one prevention trial. It was about 76 people. The average delay in the onset of type one was two to three years in the group that got the drug versus those that were in a placebo group, some of those people who got the drug have now gone over 10 years without developing type one. The treatment in the trial was daily IV infusion of the medication in an outpatient setting for 14 days and then stopping nothing, no further therapy. The people that are having that long, lasting response. It's a little over a third of those who got the drug. You know, we can look at this glass, half full, half empty. Not everyone responds. It would be nice to know up front. Can we predict who's going to have that super extended response? Or could we know shortly after they've gotten the drug, how the immune system's changed? We're not there yet. We're working on, I think we have some good leads.

Scott Benner 44:29
Did they have any other auto immune benefits other than not getting type one? They get sick less often, anything like tangible

Dr Steve Gittleman 44:40
you know there, there's certainly occasionally people that have other concurrent autoimmune issues, and I don't think there have been enough for us to really know if it alters the course or risk for other autoimmune conditions, the main other things that run with type one thyroid disease and maybe up to 20% Celiac disease, maybe in five to 8% not clear that any of those other conditions are impacted by this. Okay, you would also wonder, well, this is great. How can we build on this response and get an even better response? One of the considerations is maybe we give a second course of this sometime down the road, another 14 day. Course, it could be at a set time interval, like six or 12 months later, it could be following the immune and metabolic response and coming in if it starts to slip. This has only been used in eight and older. And as I mentioned, I think at the top, the incidence of type one is increasing, particularly in younger children, or it's increasing at a rate of three to 5% per year for those under age six. So it would be great if we get these therapies into younger children, and we actually have fully enrolled a study now for children under eight to look at the safety and efficacy in that age group. The idea of simplifying the regimen, as you mentioned, it's not the world's most convenient thing to have to get 14 daily doses and disrupt your life and spend your week and weekends with us. So ultimately, someone has to explore a different therapeutic protocol. And I'll just leave it at that. You could wonder if this could work even earlier in the disease process. I mentioned we used it at stage two, that highest risk point, but maybe if we came in earlier at stage one, it could work even better. I also mentioned that we have 1111, treatments that look very promising in new onset, really duplicit maps, the main one it's gotten. You know this notoriety because we've conducted a stage two study with it, but you could think about any of those other therapies that have worked at stage pre new onset, and move them upstream into Stage Two or stage one, and evaluate them. And those would be the things you know, if they worked by different mechanisms, if you're thinking about combinations, maybe use to place a map plus one of those as a way to really get an additive or synergistic response. So, you know, for me, I think we're, we're at the end of the beginning. You know, it's super exciting that the policeman has worked. You know that that idea that we learn from what we've done in the past and try and build on it? I mean, now's our time. I'll just tell you one other thing you mentioned. I don't know if you you stated as positive things from covid. One thing that we learned from covid was we were conducting a teplicit Bab study during covid, and so a lot of studies were stopped. You know, because of the risk of immune therapy during covid, we don't think of this drug as immunosuppressive. We think of it is immunomodulatory. We give it for a brief period of time, it resets the immune response. It doesn't require chronic therapy. And so we're very keen to continue the studies during covid in part to evaluate its safety. And sure enough, in the trial, the people who got to please med were not at higher risk for covid or severe covid, or, you know, required hospitalization or treatment for covid, it occurred in an even likelihood between the drug treated and the placebo group. So we learned a lot about just kind of the nature of this therapy, kind of the thoughts of using it moving forward. Moving forward, right?

Scott Benner 48:43
That's interesting. If you feel like you've said everything you I mean, obviously I think you could probably talk for another year about this, but if you feel like we've buttoned that up nicely, Can I shift you a little bit into into your practice and ask you a couple of questions? Okay, yeah, that's awesome. Thank you. I appreciate it. I know it's a big change I'd like to throw out to you an episode or two that I've done in the last couple of years that sticks with me over and over again, right? So I talked to the mother of a young girl who has type one diabetes. She's in her teens, and the mom has PCOS and had a weight struggle that she eliminated with GLP medication. She notices the daughter, who's had type one for many years, of three, four years, type one diabetes, using, you know, 50 units a day, like, you know, has the genetic markers. She's type one, et cetera, the daughter is starting to gain weight. The mother sees it as maybe PCOS as well. Talks a doctor into GLP for the kid. Sometime not long later, the daughter takes her insulin pump off and is only injecting one unit of basal insulin a day, which goes on for a long time now. A couple of years later, her insulin need is rising again, just. Put her pump back on recently, etc. If all that on its face is true, what? What the hell happened? Why would a kid who's been using insulin full force for four years suddenly not need hardly a fraction of it for two years on a on, just on osempic?

Dr Steve Gittleman 50:20
Yeah. So this is a provocative area. It's extraordinary.

Scott Benner 50:23
And I know it's Yeah, yeah. Most people I talk to, if it helps them, they get maybe a 15, 20% reduction in their insulin needs, right? And I'll make the argument that maybe they have insulin resistance on top of type one, and that's why it's helping them. But this one specific story freaks me out.

Dr Steve Gittleman 50:39
Go ahead. I'm sorry, yeah, no, I think without knowing more details or studying this person more in a clinical research setting, it may be hard for us to really know. Let me see if I can set up the response. I went on and on about therapies to target the immune system. Part of our idealized therapy for type one is take the edge off the immune response and, you know, decrease that autoimmune attack. But what can we do to support the beta cell? What can we do to help it function better regenerate? We actually have lots of potential, promising drugs. On the immune side, it's still a big question mark on what to do to support the poor beta cell. Into that conversation comes the question about GLP, one receptor agonist, and a few other types of drugs these days in animal models, the study suggests that the GLP one receptor paragus might be doing some interesting things to beta cell survival, certainly function, maybe regeneration. There's been some hope that that could be part of the missing puzzle, and that if we combine immune therapy with this class of drugs. That's the secret sauce. The studies to date that I've seen haven't looked I mean, I think what they show is, if you have beta cell function, the GOP one receptor agonists are very helpful in in supporting the beta cell, in secreting the insulin it's capable of making it's not clear that it's altering the natural course of disease, that it's preserving beta cells longer or causing any regeneration. You know, in your particular example, I'm not sure I can fully answer the question. You know, it may be, as you mentioned, that it lowered insulin resistance, that there was pre existing beta cell function underneath everything, and it just helped the existing beta cells function better for a period of time, but ultimately, over time, the beta cells fade and disappear. When we talk about the honeymoon, it can be highly variable. And basically the number of those cells, the function of those cells, the durability of those cells, it's most closely related to your age of diagnosis. So two year old is who gets type one? I think that's what you mentioned your My daughter was just too Yeah, yeah. Yeah. She probably didn't start with very many, and they probably disappeared fairly quickly. You know, if you got type one tomorrow, you probably would have a lot more beta cells there, and they would last longer, and you'd have a much different experience for this child, adolescent that you're describing. Is so. What I should say is, at any age, despite what I just said, there's a great deal of heterogeneity. Some two year olds will have more of a honeymoon. Some adults may have a very short honeymoon, and some may have a very long honeymoon. So age is a proxy for something we don't fully understand in this process of beta cell destruction. But I think in your in your example there, I think the GLP one receptor agonist might have come in and helped support her underlying beta cell function. While it existed, she had a nice ride in her honeymoon. It just ended up fading, and then she's now having to give insulin back.

Scott Benner 54:21
Yeah, my expectation is that somewhere between the PCOS and the weight gain that was muting whatever kind of honeymoon she was going to have, and then you kind of lift that weight, and then the honeymoon kind of returned. It's almost how it like, I mean, that's a very rudimentary way of thinking about it, but like, that's the only thing that makes sense to me after talking to them a couple of times in the podcast and hearing their story, but I mean, she was literally down to injecting one unit of basal a day. Yeah, yeah,

Dr Steve Gittleman 54:51
that's quite a remarkable story. Yeah. And those, those are the kinds of stories. Those are like the breadcrumbs that we're talking about earlier. Is if we know unusual cases and try and tease apart how and why things are happening there, that might give us important insights to what we do moving forward with a, you know, a larger trial,

Scott Benner 55:13
no, I think so too is going to be quite a pivot. But you said that at some point you thought you were too bench focused and not paying enough attention to your to your patients, that's obviously happened a long time ago to you. Can you kind of lay out for me and for other endos who are listening, what your I guess, core theories are about how to support your patients. How do you, what did you do with that information you know, that experience, and how did you turn it into a practice that's been going for so long? How do you, what do you think the keys are to supporting people with type one in a clinical setting?

Dr Steve Gittleman 55:45
Yeah, that's a big question. A lot of this gets to the heart of just training and practice of clinical medicine in this day and age, I think traditionally, training is an in hospital experience. Most of what you know, trainees in medicine are learning is someone who's had an acute challenge and is admitted for ketoacidosis, and, you know, goes into the intensive care unit, out to the ward and then is sent home their next next intersection with someone with diabetes. You know, it's probably a very busy outpatient clinical setting where you know they may only have 15 minutes. How in the world can you really appreciate what life with a chronic condition like diabetes is about in those kinds of experiences? So I think part of the fundamental change for me, I just happened to maintain my curiosity about diabetes, despite the fact that I was working on a very reductionist aspect of Endocrinology in a laboratory. And, you know, I asked my department chair to go to diabetes camp one summer. You know that one week experience to me was just revelatory. You would think I would have known growing up my family and other types of experiences, but just kind of, you know, meeting kids, living with them, looking at how challenging it was to ask them or their families to make such complicated decisions, day in and day out. You know, there's no other condition quite like this, just trying to convey that challenge and making sure as healthcare providers that people have the empathy and realize the inadequacy of the tools that we're giving people. You know, I think that's a large part of what I tried to bring to our clinic and our team and just try and help people along the way. Yeah, that's lovely. That's part of what shook me up and just helped me shift direction. I will say one other fundamental change that I think has been great for pediatricians. You know, it used to be and you probably saw this with your daughter. Kids get up to graduate from high school, and you know this school says, Congratulations, here's your diploma on you go to college or your first job. We did the same thing in diabetes clinic. Yeah, you've graduated. We've done all we can for you. Good luck. And there's a lot that gets lost in those ensuing years as a young adult. And so one thing that has been very helpful to us with, you know, some of the change in healthcare legislation, and being able to follow people up to 25 now in a pediatric practice, through Obamacare and other mechanisms. You know, we get to support people through those further years. And so I think the baton is passed from healthcare provider to that young adult in a very different way. Now we kind of just ensure that all that success in the pediatric years is maintained as they move on to an adult diabetes practice

Scott Benner 58:59
carried over into a time when they can actually, you know, what do they talk about? You know, your brain is not fully formed till you're in your mid 20s, right? Like until it That's right. It makes a ton of sense to me. The, you know, I go back to over and over again interviews I've done with adults who are, you know, in their late 20s or early 30s, who retrospectively look back on their college years or after high school years as times when their parents said, oh, you know, you know what you're doing, and then they went off and they just completely ignored it for four years, or, you know, like or to put very little effort into their management. And then, as adults with a fully formed brain and an understanding of what had happened to them over the last decade. Come on here and tell me, I wish my parents would have stayed involved longer, even if I was pushing them away as an adult. Now, I wish they would have pushed back on that because of what I think I lost in my health by by allowing an ill formed person who's not ready yet. Take care of something so complicated to be the sole provider of the of their own care for those formative years right in there, yeah. I've just heard it so many times that I believe in it so strongly. Yeah, yeah.

Dr Steve Gittleman 1:00:15
One, one slide that I often use in educating, you know, trainees, and also with parents, is this image of a child riding a bike and then the parent, kind of running along beside them or near them to catch them if they happen to fall. So we really stress this idea that you're you're focusing on this, this, this notion of interdependence that you know maybe you're not hovering quite as closely I just would not fully let go. It's too important an issue. It's so much to ask in an adolescent and young adult who's got so many other things they're working on, staying involved and supporting as best you can through those years is super important to their long term success.

Scott Benner 1:00:59
It's an incredible balance to strike, and I'm in the middle of this with my daughter right now, between her spreading her wings and feeling confident and me not smothering her and also not allowing her a 1c to go from where we were able to keep it as a child to where it ends up for most people when they're 21 in college. So you know we are. The balance we're trying to strike right now is that she manages herself the way she likes, as long as her a, 1c, stays in the sixes somewhere, and if it starts to drift up too high, then we have another conversation about, hey, you need to Pre-Bolus. You know, when you see a rising blood sugar, we can't ignore that. You're gonna have to readdress it my daughter, you know, for transparency, we, I don't know if you call it micro dosing, because she doesn't do it every day, but she uses a less than therapeutic amount of of Manja No, which really helps, which really helps her, but be even down to, like, take your thyroid meds like you think that's easy. It's a little tiny pill. It's not that easy. When you're 21 to do it every day, you know, and to remember, I always say Steve, like, when this part's over, if she doesn't hate us and she's healthy, we won that. I give up and I'm done then, then I'm out that I'm that I'm sending a card that says, Congratulations on the birth of your diabetes. Good luck taking care of it. I gotta go. I can't thank you enough for for the time and the thought that you put into this. I'm going to tell you right now, while we're still recording, anytime you want to come back on for any topic that you think would be important for people to hear about, I'd be thrilled to have you.

Dr Steve Gittleman 1:02:32
Oh, I appreciate that, Scott, yeah, thanks for the thoughtful conversation. You know, I appreciate your questions and comments very much, a work in progress, but I hope we're leaving the conversation. You know, just hopeful we are getting there. I think the things that we're asking people to do with their diabetes today is going to get outmoded and get simpler and more definitive. Thank your family and all those others out there who are working through this. For your patients, it's taking time, but we are indeed getting there.

Scott Benner 1:03:06
I appreciate that very much. Okay, hold on one second for me.

Are you tired of getting a rash from your CGM adhesive? Give the ever sense 365 a try ever since cgm.com/juicebox beautiful silicon that they use. It changes every day. Keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Today's episode of The Juicebox podcast was sponsored by the new tandem Moby system and control iq plus technology, learn more and get started today at tandem diabetes.com/juicebox check it out. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes, hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're looking to meet other people living with type one diabetes, head over to Juicebox podcast.com/juice cruise, because next June, that's right, 2026, June, 21 the second juice Cruise is happening on the celebrity beyond cruise ship. It's a seven night trip going to the Caribbean. We're going to be visiting Miami Coke, okay? St, Thomas and St Kitts, yeah, the Virgin Islands. You're gonna love the Virgin Islands sale with Scott in the Juicebox community on a week long voyage built for people and families living with type one diabetes. Enjoy tropical luxury, practical education and judgment free atmosphere. Perfect day at Coco Bay St, Kitts st, Thomas, five interactive workshops with me and surprise guests on type one hacks and. Tech, mental health, mindfulness, nutrition, exercise, personal growth and professional development, support groups and wellness discussions tailored for life with type one and celebrities, world class amenities, dining and entertainment. This is open from every age you know, newborn to 99 I don't care how old you are. Come out. Check us out. You can view state rooms and prices at Juicebox podcast.com/juice cruise. The last juice cruise just happened a couple weeks ago. 100 of you came. It was awesome. We're looking to make it even bigger this year. I hope you can check it out. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com.

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More

#1642 Bozo No No

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

Katharyne, 47, was diagnosed with type 1 diabetes at the start of 2025 and is still in her honeymoon phase.

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.

Katherine 0:15
Well, hi Scott, thank you so much for having me on your podcast. My name is Catherine, and I was diagnosed with type one pretty much the start of this year, around New Year's Day.

Scott Benner 0:28
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcast or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. While you're listening, please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin.

This episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox us med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us Med, Comm, slash Juicebox or call 888-721-1514, use the link or the number get your free benefits check and get started today with us.

Katherine 2:23
Med, well, Hi, Scott, thank you so much for having me on your podcast. My name is Catherine, and I was diagnosed with type one pretty much the start of this year, around New Year's Day, really. Yeah, it was a crazy time.

Scott Benner 2:42
Oh my gosh, you guys have New Years in

Katherine 2:43
England too. No, I'm not. I'm not in England, in California.

Scott Benner 2:47
You're in California. You You sound British? No, I am British.

Katherine 2:53
I've been here for about 16 years now.

Scott Benner 2:56
Oh, but they do have new years in England, though, yes, they do it's on the same day.

Katherine 3:02
Well, you know, we have this weird calendar that, yeah,

Scott Benner 3:06
they do it on the same day. It's awesome. I like when there's unity. So wait, how old

Katherine 3:11
are you? Oh, God, I'm 47

Speaker 1 3:15
but that sounded like it hurt you. Oh, I never tell anyone my age. Well, we need

Scott Benner 3:21
to know for context. So you're 47 I'm 47 Yeah, all right, do you want to say it a couple more times till it stops hurting?

Katherine 3:28
No, it's late. No, I'm gonna pretend this never happened and

Scott Benner 3:33
you're diagnosed, so eight months ago. Yeah, wow. Out of like, like, the clear blue, something you saw coming. You didn't have an illness even first Wait, I didn't have what an illness Were you sick prior?

Katherine 3:49
Yeah, so, well, it was funny. I yeah, I was losing weight last year, and I didn't really know what was up. And I had a bit of a crazy year. My husband and I were trying to be clowns, and we were going to LA a lot and performing in clown shows. And I just thought maybe I was just overdoing it a bit and doing this sort of theatrical clown thing, and it was very exercise heavy and losing a lot of sleep. And I, I was I was okay, though I was functional right up until just before Christmas, like I was literally in a show on the 23rd of December, and I was fine. And then we went on vacation to Las Vegas, and I on Christmas Day, I just started getting really sick, and I was like, Oh, I think I've got flu, and I'm just not doing too well. And we kind of cut our vacation short, which was sad, because we had the kids there with I've got three kids who are aged between 16 and 24 and we came home San Diego. So and, gosh, I just got really sick. Once I was home, I started throwing up, and I just was like, This is the worst flu I've ever had. And I kind of don't remember a whole lot after that. I think it got to I was admitted into the hospital on the 28th of December, and I don't really remember anything until first of January, and everyone's just running around me, saying, Happy New Year. And more than nurses are wearing, like, little hats with, like, New Year's Day and stuff.

Scott Benner 5:33
They're like, hey, it was Christmas last time I looked what happened?

Katherine 5:36
Yeah, and so I guess I went into DKA and I had no idea at

Scott Benner 5:42
all, did you take yourself to the hospital, or did your husband take you?

Katherine 5:47
So I guess I was getting sicker and sicker. I started growing up, and I had a shower, and I kind of just like, sunk down in the shower, and my husband was like, he didn't really want to take me to the hospital. He was like, Oh, are you really sick?

Scott Benner 6:03
And I don't want to give up the afternoon. I don't want to pay for this.

Katherine 6:07
Yeah, you know how it is. And so in the end, he was like, talking to chat GPT, and he was giving on my symptoms to chat GPT. And chat GPT is like, I really think you should call 911, at this point. And so he was going to take me to urgent care, but I had stomach pain, and apparently I was saying, No, I can't go into urgent care. So in the end, I think I started losing consciousness, and I was just rambling. And so he called 911, and yeah, he also it was so funny because I read the logs back afterwards, and he was having this conversation with chat GPT, and it's like one of those scenes in a TV show when people are just doing they're not doing the right thing, and you're going no call 911, and he goes, Do you think I should give her some ham She hasn't eaten? And I'm reading this back like, What? What?

Scott Benner 7:04
No, by the way, like lunch meat or a cooked ham that you had guys had made. What was the I

Katherine 7:12
you know, just like a slice of ham,

Scott Benner 7:17
where'd you find this boy out? Were there? Were they out of boys when you were starting to look or what happened?

Katherine 7:22
You know, he's an angel. He just, I think he just had a lot of anxiety about going into hospital and just what's going to happen.

Scott Benner 7:31
And are you telling me, though, that if I look back at this transcript between your husband and chat, GPT, I'm going to see 1000 red flags that would have made me call 911,

Katherine 7:40
absolutely. Yeah. It's like, Oh, her legs were going blue, and like, she's mumbling, and

Scott Benner 7:46
yeah, chat GPT wasn't like, Oh, she might pop back out any second. Just hold on another minute.

Katherine 7:52
Wow. Chat GPT is like, yeah, get her to the

Scott Benner 7:55
hospital. Do you have any other autoimmune issues? Well, I

Katherine 7:59
suspect I have celiac, and I've suspected that for a really long time, and so I've never had it actually diagnosed. The doctors looked at it now and said, Yeah, I probably do have it, but you know, you've got to go through the thing where you have to actually eat gluten and then get tested. And I just didn't really want to do that to my digestive system,

Scott Benner 8:23
gluten free on your own? Yeah? So

Katherine 8:26
about it was actually a long time ago, after my youngest was born, I had a lot of stomach pain, and it was like chest pain as well, and I realized it was heartburn, and I'd never had heartburn before, and good and all of that, yeah. And I went to a specialist, and he did a lot of examinations. He also found my liver. All the the levels from for my liver in in blood tests were really out of whack as well, and but he couldn't give me any answers. He just said, Oh, you've got good and IBS, and you should go on Prilosec for a while. And I was like, okay, it didn't help that much. The Prilosec helped, but I was still getting all this pain, and so I just kind of went through my diet, taking out different things. And finally, when I took out, like, bread and started taking out wheat, I was like, Oh, this. This made all the difference. Yeah. So I've just stayed off weeks since then. How long ago was that? That was 16, 1516, years

Scott Benner 9:27
ago you would just come here, or you just,

Katherine 9:30
yeah, I just moved to the US. So I moved here pregnant with my with my third child, yeah, and I had him, and then just after he was born, I got really sick with these stomach issues, okay? And I had no idea what was going on with that. And so I mean that for me, was the solution. I found giving up weight just solved it.

Scott Benner 9:51
So, yeah, hey, why did you come here? Did they kick you out? Or were you you come here on purpose? What was going on?

Katherine 9:57
No, I Well, I was married to an American. In at the time, and also, actually, it's funny, my grandmother lived with us, and she wanted to study Montessori education. She was a retired teacher, and she got really into Montessori education. And I just finished my college degree, and I wasn't really sure what to do with it. I had two kids, and the third one was, yeah, he was on the way, and I wasn't quite sure what to do with myself. And I knew I wanted to move to the US at some point. And at the time, my husband was American, so it seemed kind of like a good choice. And she said, Listen, I got this idea, but Montessori institutes in California, Florida, and these various places. And I was like, Well, that sounds fun. So she was kind of the catalyst, in a way, to get us moving here.

Scott Benner 10:50
So also, yeah, you said it twice now, in a way that makes you feel like that, the boy that helped you with the DK is not the same boy that made those babies.

Katherine 10:57
It's not no Gotcha. Yeah, we ended up getting divorced after we moved here. And, okay, yeah, that was, that was a bummer. It was kind of unexpected. It worked out though, I mean, and yeah, it worked out. And then I met my, my new husband, Isaac, and it he's been absolutely amazing. We've been together now, yeah, I mean, I met him when my son was one year old, and he's now 16, so we pretty much raised him together.

Scott Benner 11:33
Yeah, oh, wow, that's lovely. Did you stick with an American or did you try something else the next

Katherine 11:37
time? Yeah, he's American too. California.

Scott Benner 11:41
Okay, so now you're whacked out of your skull. We finally get you to the hospital. Yeah, no. Thanks to that lovely boy. I mean, he waited till you were like, just loopy, yeah, I gotcha.

Katherine 11:53
And then I had delirium pretty badly.

Scott Benner 11:56
Apparently, I was gonna say, did they tell you what your blood sugar was?

Katherine 12:00
Oh, gosh, I've forgotten it was like, super duper high. It was, like, off the charts high. I, you know, I don't remember off the top of my head. I think I have it logged somewhere, but I Yeah, hi, I know. I think it may have been like, 600 or something. They said I should have been on a ventilator.

Scott Benner 12:18
How did you respond to the news once you were like, up and moving and doing better, yeah, what were your initial responses?

Katherine 12:25
That's a good question. So I had a couple of memories of being in the ICU, and Isaac kept trying to tell me what had happened. And I was just like, whoa, that's crazy. That's crazy. He said every time he told me he had to keep telling me over and over, and he was like, they think you've got diabetes. They think this thing happened to you. It's called DKA. And I couldn't understand any of it. I was just going, it's crazy, whoa. And then I guess on New Year's Day was when I first started, they moved me out by cu into a regular room, and that was when I started to kind of understand more what was going on. Like, okay, diabetes, okay, that's interesting, but I was really struggling. Like, they kept asking me, like, what people's names were, and I couldn't remember my kids names. They were like, you've got children, what are their names? And I'm like, like, I thought I knew, but I didn't know, really,

Scott Benner 13:21
what did they attribute that to? Later,

Katherine 13:25
they said it was delirium. They said, so basically I had flu, and the flu triggered the dka, so it seemed like I'd been building up the diabetes for probably, they said, at least four months, but it was probably a lot longer, okay, and so it was really complicated for me to wrap my head around. The Diabetes Educator was coming in, and she was trying to explain it to me, and I'm like, wait, what does insulin do? It makes it go up or down or what, like, I just I was really struggling to wrap my head around things. Yeah, fortunately, they sent a really nice educator, and she was really helpful, and she kind of spent a lot of time with me, sort of, and she came up with this Pac Man analogy, which was great. She was like, Well, you know, insulin is like the Pac Man that goes around and Hoovers up all the sugar in your system, like the little pills. And I said, Oh, now I get it. This is a great analogy. She didn't

Scott Benner 14:21
make that up, by the way. I've heard other people use that, but that's good, oh, that's that's a common thing. Is that once you're through the hospital experience, right? And you're back on your feet, and you're, you know, making sense of things that people are talking to you and you're understanding them, yeah, what is your first thought like? How did this happen to me? Or, yeah, what does your brain like jump to I guess diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us, med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friend. Simply reorder email from us. Med. You open up the email, it's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. Us. Med has done that for us. An email arrives. We click on a link, and the next thing you know, your products are at the front door. That simple, US med.com/juicebox, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox podcast. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube free automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours if you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox get that free. Omnipod five Starter Kit today, Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox

Katherine 17:00
I think I had a lot of anxiety. I really struggled with the idea that this could just happen out of the blue. So I was like, Is there something else wrong? There's something else going on. Is this a symptom of something bigger or scarier or like, is this really just it that I go home and I take insulin and now I'm okay. And it was weird, because I felt like I was hearing very mixed messages from different people. Like some people are like, Oh, this is terrible. It's a death sentence. It's a it's going to get worse. And I you kind of think of like, all the horror stories you've heard, sure, and then other other people, I mean, like the educator, she was great, because she actually had type one. And she was like, Well, you know what, I've lived with this 20 years, I'm here, doing this job. And I was like, Okay, this is good. Like, what seeing someone who's here that has been in a similar position, and who's doing, okay, I found that really, really reassuring, yeah, but yeah, going home was scary. It was like just sort of coming out into a new world and trying to wrap my head around, sort of how you use insulin, what you do and yeah,

Scott Benner 18:13
does it affect you otherwise? Meaning, do you start thinking, Well, if this just happened, like, what else might happen? Do you start having, like, bigger concerns, like, maybe life's not as on autopilot as you thought it was originally.

Katherine 18:26
Yeah, that's interesting. You asked that. Do a lot of people feel that way?

Scott Benner 18:31
No, I heard it in something you said a little while ago.

Katherine 18:34
Oh, that's interesting. That's that's really perceptive.

Scott Benner 18:37
Yeah, yeah. That's my whole job. Like, you know, would you tell me a little bit about that, please,

Katherine 18:43
about feeling kind of unsteady in life? Yeah, as I say, last year we kind of had this kind of wacky year where we were like, Okay, let's, I mean, I, my first degree was in performance, and so I've always kind of chased that. I've always, like, had that in the back of my head, like, Okay, I love acting, I love doing comedy, I love sort of doing very outward things, and I do YouTube and stuff like that. And so we really kind of dedicated ourselves to doing these classes last year and performing. And it was going really well, but it was a little crazy. It took us away from our work and our day to day lives, and it was like, suddenly, everything kind of stopped after this happened. It was like, Okay, I need to get more responsible. I need to double down on work. I need to make sure that we're going to be okay, because, like, both myself and my husband is self employed, and I would say the world feels a little unstable at the moment as well, like it kind of came, like the diagnosis came along with all the elections and the LA fires were happening at the time, and I kind of stepped out of the hospital, and it was a very new world that I stepped in. To all the sort of fun and games and everything, kind of had to slow down a bit, and I had to really sort of regroup, and life became a lot more simple. I mean, now we kind of focus on work and just taking the dog for a walk, and it's sort of become less about sort of chasing dreams at the moment. I mean, I always hope that comes back and and there's time to chase dreams.

Scott Benner 20:24
But, yeah, what do you do for a living? Like you don't have to tell me exactly, but what kind of work do you do?

Katherine 20:30
We create software and online courses. Okay, so I've been self employed for 15 years teach people how to make books, and you've been

Scott Benner 20:39
making a living at that your whole adult life. You've raised three kids off of that, but in your heart, you'd like to be a clown.

Katherine 20:48
You know, I don't know if I'd say like I want to be a full time clown, but I think performing, I enjoy live performance. It's a lot of fun. I'm good at it. My husband's good at it, too, and it gives you a buzz like nothing else does. It's really fun to be on stage and to just create something that's new. And we were doing these classes, and they're so fun. There's a place in LA called the idiot workshop, and what they do is they put you on stage for 10 minutes, and it's okay, you got to be funny, and you can't, like, repeat anything that you've ever done before. You have to sort of improvise on the spot. Yeah, and you've got to be funny, and it's like, you've got to make the audience laugh, and they'll, they'll gamify it and say, okay, when the audience laugh, you're allowed to step forward, but you can't step forward until people are laughing at you. So you you go through everything you can, making funny faces, or, like, grabbing a weird prop, or like, staring at someone like you go through all these things. And it's really empowering, though, because you come off and you go, wow, I had no idea that was going to happen tonight, that I was going to come up with this weird thing, that I did this routine or this performance,

Scott Benner 22:04
I think I understand also, what did you call it? The weird workshop? What is it called? It's called the idiot workshop. Idiot workshop. When you said that, I thought everybody who's hate listening to me right now thought to themselves, yeah, that's, that's what we call Scott's podcast.

Katherine 22:19
Yeah, it's a great name.

Scott Benner 22:21
Well, I mean, I so I take your point. Do you think you'll get back to it? Or do you like, I guess my question is, is, did this sober you the diagnosis? Or do you think it just slowed you down for a half a second?

Katherine 22:32
That's a really good question. I mean, I would love to go back to it. I think it's just one of those things where it's like we need to stabilize first and sort of make sure that our lives are in good order before we can sort of take like, you know, just sort of take risks, take time away from work and things like that that that feels like now that the stakes got a little bit higher, is what I would say,

Scott Benner 22:56
like life turned on, or something like that. Like the thing that you hear happens to other people? Happen to you?

Katherine 23:02
Yeah, that's, that's probably a good way to say it, yeah.

Scott Benner 23:05
Like you have three grown kids. Yeah, you've navigated changing continents. You navigated changing husbands, you raised three kids. You found a way to chase your dreams while you were doing that and have a good time. Nobody had been sick, except for when you were like, Oh, I can't eat wheat anymore, which probably didn't seem like a big deal at the time. Just like, that sucks, but I just won't eat wheat. So other than that, you hadn't seen a lot of illness through your life. Yeah?

Katherine 23:32
I mean, yeah, I think I've been very lucky in a lot of ways. Yeah, I think I rode on that a lot, and sort of this was the first thing that really made me go, oh, okay, I now I need to plan a little harder. I can't just rely on, like, ah, the universe loves me and everything's going to be great. It's like, I need to, like those

Scott Benner 23:52
people who told you, like, put, you know, save for yourself first, you know, make sure you have health insurance. Like all those people who seem like they were being a little too careful. Maybe they just had an experience you hadn't had yet. It's interesting. That might be true. Yeah, I wonder, like to that point, how did your kids accept that? Like mom's sick. I mean, is the first thing, and then they have to understand what diabetes is. But do you put a ton of effort? I mean, you're only eight months into it. You're still learning what it is for yourself. Are you sharing it with them? Are you trying to figure it out for yourself before you decide how to tell other people more about it?

Katherine 24:27
Oh, that's interesting. I mean, I think at the moment, I'm still quite lucky, because I think I'm still in the honeymoon phase, and so I'm not like needing a ton of insulin at the moment, like I need a little bit, I mean, touch wood, I feel like I'm managing it well at the moment. So it's really just, Oh, I gotta go do a shop before I eat, and things like that. I don't think it's really affected them too much. I think, I think for my youngest, I think he was a little traumatized by me going into the hospital and just that whole experience, especially being in ICU. I think I. That was pretty hard on him.

Scott Benner 25:01
Did they see you there, like when you were unconscious? Did your husband bring them or?

Katherine 25:06
No? No. He saw me going into the hospital. He saw me when the paramedics took me, but they didn't see me in ICU. They came to see me in the hospital once I was in a regular

Scott Benner 25:16
room, but that's five or six days later, right? Yeah, yeah, yeah. That's a long time like to be at home thinking, like, my mom just got like, my mom was babbling, and they put her in the hospital. I haven't seen her in five days. Yeah, yeah. How soon until you can care about that? Do you know what I mean? Like, when do you get to be a mom again? When is the trauma for you dying down enough that you can start thinking about the other implications? I think New

Katherine 25:41
Year's Day, I say that that was pretty much when they put me in a regular room and I could speak and sort of normally. And that was when I FaceTime them from the hospital. And that was pretty cool once, once I could talk to them and talk with FaceTime. Then that kind of changed everything. Then, then I could think about them,

Scott Benner 26:04
yeah, yeah. And they could see you and see that you were at least, kind of, yeah, popping back a little bit. Jesus, a lot. It really is okay. So you're, you know, you're eight months into this. They started you out, I imagine with a pen. Maybe Did they give you a CGM?

Katherine 26:21
Yeah, so I've got a Dexcom now. I've got on a Dexcom seven and, yeah, I've got pens, so I'm still doing that using the

Scott Benner 26:32
injections. And you think you're maybe honeymooning still,

Katherine 26:35
at least the Endo, she thinks that. So it hasn't changed too much. I've stayed I do basal of 14 units each night, and I just do maybe two units before meals. But we eat pretty simply. I eat pretty low carb that I've just found that that seems to be working well for me.

Scott Benner 26:54
I already asked you how old you were. That made you upset. I almost asked you how much you weighed, just so I can understand the insulin you're using.

Katherine 27:00
I lost 40 pounds. I was kind of overweight last year, and between some I came out the hospital 40 pounds lighter.

Scott Benner 27:09
The fluorbees Knocked 40 pounds off you. Well,

Katherine 27:12
yeah, it did. I was, I would think I was about 180 pounds. At some point last 185 and now I'm like, 141 40.

Scott Benner 27:23
You've been here so long you didn't tell me in stone, I appreciate that. Oh yeah, yeah. Every time someone says that, I'm like, I don't know what that means.

Katherine 27:32
Oh yeah, I forgot what a stone is. It's like, 12. Is it 12 pounds? 14 pounds?

Scott Benner 27:36
I love that you don't know. You sound like you would know, but you don't know. I just Googled, do your kids talk normal, or do they talk like you?

Katherine 27:44
So I've got two girls, they're 24 and 22 and they kind of have British accents. They my son is Californian, but it was so funny with my younger daughter, she has autism, and she was on an IEP at school, and they were assessing whether she needed speech therapy. And they were like, well, she has this very storybook way of talking. They're like, we can't decide whether she has a speech issue or whether she's just British.

Scott Benner 28:14
So did they figure it out? What did they what did they land on?

Katherine 28:17
I think they landed on, I think she had a little bit of speech therapy, but they determined that even though she has kind of an unusual pattern of speech, it wasn't anything to be concerned about. She just uses very long words and talks like a fairy tale.

Scott Benner 28:36
So right now, your management's not too overwhelming. Is that giving you some opportunity to kind of settle into it. Or do you find yourself thinking I'd like to get to the part where this is more, you know, predictable?

Katherine 28:49
No, I I'm like, I'm just, how do I keep it like this as long as I can? You know, I'm kind of grateful that I'm doing okay. And I, I feel like the doctor always tries to scare me a bit when I go in. She's like, Oh, it's going to get worse, you know, oh, you're going to you're going to need more insulin. Oh, you're going to have more symptoms. And I'm like, oh, okay, I I'm just going to enjoy this while it lasts,

Scott Benner 29:13
yeah, oh, no, I would take it for as long as you can get it. Sometimes people will describe that, you know, you make a big Bolus for something, and then your body jumps up and helps a little bit, and you get low. But it doesn't sound like you're using much at all, like you're you're putting, you know, what basically translates into a half a unit an hour of basal. And for a person your weight, it's not very much. And then you're just putting in a couple of units to what, like, kind of kill the spike a little bit at meal time. Yeah, that's it. You go up and come back pretty quickly after that. Yeah, yeah.

Katherine 29:48
I keep it pretty smooth. And we walk every day, and I found that helps. But I often find I go low when I walk, though. So I tend to take, like, a big bag of, like, cherries and straw. Reason things with me, and just sort of Munch those as I walk along the beach.

Scott Benner 30:04
So when you go for a walk, even that smaller amount of insulin is too much, you start getting low. Yeah, yeah, interesting. Did the weight stay off?

Katherine 30:12
Yes, it has, actually, but I really changed how I ate. So I tend to eat, sort of, I eat a lot more fruit and vegetables, and just I eat kind of healthy now we eat a lot of fish.

Scott Benner 30:23
So before is this is the thing people mentioned sometimes that the gluten free options for a lot of foods are maybe more caloric. Yes, that's probably true. Yeah. And see what you get away from, like the breads and things like the gluten free breads.

Katherine 30:41
Yeah, I did. I gave up. Yeah, I don't bother buying bread anymore. I We eat tortillas. We do quinoa. I get, like, chickpea pasta and lentil pasta, and we do those.

Scott Benner 30:52
But yeah, and those are adjustments you've made since your diagnosis.

Katherine 30:56
Yes, very much. I mean, last year, honestly, I was eating a lot of junk food. We were driving a lot, going between San Diego and LA and, yeah, I mean, I would drink, like, venti lattes, and I was doing all the wrong things. Like, it was such a surprise, I mean, but it's been a big change of lifestyle. But it hasn't been bad, actually, it doesn't bother me. I'm kind of happy that I'm eating healthier? Yeah?

Scott Benner 31:22
No. I mean, I guess there are people who would talk about like things got taken from me, but you're seeing positives from it, so it feels more like a good step, instead of something being taken away.

Katherine 31:33
Yeah, yeah, definitely, as far as food's concerned, but that's that's definitely the case, yeah? Okay. How did you find me? How did I find you? I don't know. You know, I think I found you through Facebook. I think I was looking for groups and what, what I found well, so it was interesting, because a lot of people told me, like in the hospital, they were saying, Oh, this is very rare. Oh, it looks like you've got type one, but that's really unusual for someone to be diagnosed with that later in life?

Scott Benner 32:02
Yeah, no, it's not. But okay, well,

Katherine 32:05
right? And so it was interesting, because then that was what I found. When I found your group, I found a lot of people had similar stories, and I was like, oh, and I felt a million times better. So as I said, I kind of had this sort of hypochondria brewing of like, is this all that? Is this? If it's so rare, why has this happened to me? Like, what what happened? And I think seeing a lot of other people in a similar boat, really, like, was really reassuring, yeah. So I'm very grateful for your group and your podcast, that I've been able to find that and see that in other people.

Scott Benner 32:41
I'm glad. I mean, even if it just alleviated your feeling of like, oh, what's going on here? Like, is this me? Yeah, you know, that would be a lot, but there's, I'm sure you've gotten more from it since then, and more will even come, especially because, and I'm not here trying to scare you, like your doctor, but doctors also not wrong. You know, as your insulin needs go up, the game changes, yeah, yeah, yeah. I mean, I don't know how long this will last for you. Listen, I've interviewed people like you who've, you know, been in like, a honeymoon, like you might have a lot of, right? It could take years for it to come. You know, full circle. I've interviewed people who have lot of who started using, like, a GLP medication, and they're down to almost no insulin at all, wow. And not gonna last forever. But, like, they apparently had some insulin resistance on top of the type one, and they got even a, you know, a little more of a boost out of it. So no one knows how long it's gonna take for you to, you know, see the quote, unquote, full effects of this, yeah, but you know, hopefully it happens gracefully and gently, so that you can adjust as it comes.

Katherine 33:46
Yeah? I hope so. And I think that was the other thing that I really got from your group and also from friends as well, that the diabetes educator in the hospital, she sort of said to me, don't google anything. Just don't google and that freaked me out even more, because I was like, Oh my gosh, what am I going to find? What terrible things. And then I started sort of having all these, like everything started becoming like a terrifying thing to me, like, Oh no, if I, if I have, like a sore spot on my toe, is is that going to turn into my legs falling off, or something like, and there was this sense of the unknown. And then I think what I found was the more people that I saw sharing their stories and saying, Well, I've had it for this long. I'm managing it. This is how I manage it. It started to feel a lot more manageable. It stopped feeling like this terrible, scary thing that I wasn't allowed to Google.

Scott Benner 34:37
Yeah, no, I agree. I think that. I don't want to say knowledge is power, because that sounds very simple, but I think you should know as much as you can handle knowing, yeah, that that will pay you back at some point, having information for sure. Yeah, really, what I was saying too is that as this progresses, you're going to have that group to back. Bounce things off of, because right now, where you're at, like, I don't even think the Pro Tip series would help you that much. How interesting, because you're not really doing a lot with your insulin at the moment. Like, I mean, not that you couldn't get ahead of it and grab yourself an understanding, but I don't know how much of it you'd get to use right away when you're basically right now shooting basal and just, you know, throwing in a couple of units for a meal and making sure you have a snack when you go for a walk. That seems like what diabetes is right now for you, is that right?

Katherine 35:26
Yeah, yeah, that's, that's pretty much it.

Scott Benner 35:30
Wow. I hope that lasts forever for you. First of all, that would be awesome. Thank you. Touch wood, exactly that would be. That would be really, really lovely. And I've talked to people who have had this part of it go on for way longer than you would think. You know, it wouldn't be unforeseen if it lasted years. And it also wouldn't surprise me if you sent me an email in three months and you're just like, hey, I use a lot more insulin now, you know, so,

Katherine 35:55
and that's one of those things where I'm like, you know, I do wonder about, sort of, whether there might be a time in the future to go back to the UK, or to go back to Europe where there's a bit more security, or if it feels like maybe there's more security around sort of insulin and things like that. So those are the kind of sort of things I think about at the moment, of like, okay, where's the future?

Scott Benner 36:20
You mean, to get free insulin? Yeah, on the NHS, yeah. Because, I mean, I think there's going to be insulin here, but you know, if you're talking about just the pay for it side of it, I mean, yeah, it doesn't hurt to be somewhere. It's free. Also, that sometimes changes a lot about the options you have for taking care of yourself and the kind of the kind of stuff you have. Like, I don't know if I think they'd cover your CGM, but I don't know if they'd cover every pump you wanted, or if it's just some pumps, if you decide you want to pump one day, yeah, I don't know. Like, you'd have to talk.

Katherine 36:53
I had that covered Dex pump, so I was like, Well, that's pretty awesome. Dexcom and insulin.

Scott Benner 36:58
It's, Does it scare you that much, or is that just a big idea? Like, are you really thinking about that, like, practically, or it's just the thing that popped into your head that you've considered,

Katherine 37:07
I do think about the future, and I'm sort of looking at the sort of basal of being self employed, and just how things are, political climate, and just there's, like, a whole bunch of things at the moment that feel very uncertain or very unknown, and so I don't know, and I do wonder if it's like becoming sick, and there's sort of maybe some mental health issues that go with that, because I do feel like diabetes, kind of like I notice when my sugar goes Low, I tend to start having a lot more anxiety than I used to have, sure, and I don't quite have that sense of like, oh, everything's just going to be totally fine all the time. So interesting. Yeah, I do wonder if I chase security a bit

Scott Benner 37:54
more now. Yeah, did you have anxiety prior? I had

Katherine 37:57
anxiety on and off. But I also, I think I had a lot more faith in myself. I think now maybe I've lost a little bit of like, okay, I need to take care of myself. I'm not as invincible as I thought I was.

Scott Benner 38:09
Oh, so the reality of life is getting to you. Yeah, I

Katherine 38:12
think that might be it. Oh, I don't like that word reality, but yeah, no.

Scott Benner 38:17
I mean, listen, there's a couple different ways it's going to hit you the way it hits you, but I'd be happy that it made you, made it this long without any, like, needing anything like that. You know what I mean. But at the same time, I understand exactly what you're talking about, like, just the way I look at it is you're mainly cruising along and things are going well. Yeah, I had the same exact thought. You know, my daughter was diagnosed when she was two. That's 1919, years ago now, I guess, yeah. And prior to that diagnosis, not only was life like working, like we had climbed out of, you know, a number of different, like, we know, a slow start in life. I grew up poor. My wife was too like we were, like, pulling things together. You know, things were coming together. We had bought a little crappy house, and you know, we were in the middle of having, like, our daughter's second birthday party in the backyard during the summer, and we were like, wow, look at this is going exactly, you know, this is going great. Our kids are doing well, and, you know, we're chipping our way through life and everything, and then all of a sudden, like, bang. Like, there it is, right? Like, yeah, yeah, not, not a thing you never thought about in a million years. Like it. Never once considered that this could possibly happen to anybody, to me, or to her, to anyone that I I

Katherine 39:30
think that's even more of a shock with a child as well. Like you really don't expect that.

Scott Benner 39:34
I don't know it all sucks, but that feeling of like, wow, how did this happen? Yeah, is this the reality that we live in now? And it is like the truth is, is that, you know, sometime later, she got hypothyroidism. My wife had it, you know, my son has it. I don't know, you know, bad luck. I don't know what you want to call it. You know, have you had your kids tested to see if they have any markers?

Katherine 39:56
Yeah, we've, we've checked. No, I haven't. Actually that. That's probably something we should be looking at doing. Well, if

Scott Benner 40:02
you need something else to worry about, let's start thinking about that. Great. Okay, yeah, you can look at trial, net.org,

Katherine 40:10
that's one of the places. Is that the place to look? I'll take a look at that.

Scott Benner 40:14
That's one of the places you could look. They could do a blood test and tell you if they have one or more of the markers that would indicate that makes type one diabetes more possible.

Katherine 40:25
The first thing we did was we, we checked everyone's blood sugar and like, oh, let's everywhere. Okay, everyone's take a finger prick. Let's see where your sugar's at. Yeah, they all seemed okay.

Scott Benner 40:36
So now, yeah, there's, I have five markers, and you know, the more of them you have, the more likely it is you're going to get type one at some point. That's interesting. Yeah. So my expectation for you would be that you had markers and the something about getting the flu just kind of, you know, short circuited your your immune system and and here you are.

Katherine 40:56
Yeah, there were a lot of things sort of going off last year. As I say, I was losing a lot of weight. I was really thirsty all the time. I was I got a slushy machine like to make ice, and I was just drinking non stop. And in hindsight, I It seems kind of obvious what was happening, but it didn't kick in until I got the flu, and they said that was like the trigger for it all.

Scott Benner 41:19
Now listen, I interviewed a woman this morning who's an ICU nurse, and she ignored about every like blaring siren about her kids diagnosis. So don't worry, you weren't going to figure it out from being thirsty and losing weight, you know. Yeah, you're probably just, I mean, listen, you're a lovely person. You said, Oh no, no no. Wait, listen, you said, before you take the take the compliment. Oh, I thought being active and clowning was why I was losing weight.

Speaker 1 41:46
That's true. Yeah, I held in a laugh

Scott Benner 41:49
when you said that. I just want you to know, because I was like, Oh, she's she's like, Oh, I'm more active now I must be losing weight and it's from like at all. It made me wonder, is, like, Geez, what's involved in that clowning that you thought you lost weight from it.

Katherine 42:04
It's pretty active. You bounce around a lot as a clown.

Scott Benner 42:07
Well, yeah, but don't you think that everybody who wanted to lose 40 pounds would just like, get a red nose and head out if it worked out?

Katherine 42:14
Well, that's a great idea. I think, I think there should be a workshop for this.

Scott Benner 42:19
Why don't you see here's how you handle it. Now you combine these two things. It's clown school and, like, kind of like an exercise program,

Katherine 42:28
you know? I think someone actually was doing that for a while. Yeah, I think it had a name. It wasn't like clown fitness, it was that, yeah, someone was doing something like

Scott Benner 42:39
that, yeah, I can't imagine that was a big winner as a business. But I want to try to also, like, lessen your fears a little bit. Like, I mean, if you feel like politics is more fraught than normal, I have to be honest. Like, I've been here my whole life. I don't think it is okay. Yeah, I think the the words and the things we're worried about are they're new and they're more they're maybe a little more different than they've been in the past. But this thing has a pretty amazing way of self leveling.

Katherine 43:13
So that's what I hope. That's That's my hope. I mean, you know, I became a citizen last year, and I was so happy to become a citizen. I'm so proud, because I really do love America. I mean, I've been here 15 years and 16 years now. I think it's a great country, and I'm very happy to be a citizen.

Scott Benner 43:34
I'm glad that's nice. Welcome. Thank you. What's it like to become a citizen? What do you have

Katherine 43:41
to do? Oh, it's Yeah. Let me think, well, you have to take the test. So that's kind of easy. You just gotta learn the questions. They have, like, 100 questions, and then they ask you, I think it's like six to 10 of them. And once you get I think it's like six, right then you pass and you have to get all your paperwork together and just sort of show them all your marriage stuff and things like that. But it's really funny. They they kind of reel you in with all these videos, like stadiums of people waving flags, and it looks like this huge and they're like, Oh, you're going to go to a ceremony, and it's going to be this big, exciting thing. And then really, what happens? They put me in a room with this guy on Zoom, so I wasn't even with like a I was with someone on Zoom. So I was just in a little office on my own talking to a guy on a computer, and he interviewed me and asked me the citizenship questions, and at the end, he's like, Yeah, okay, you passed. And then he's like, please go outside to the corridor and then go in the elevator. And so I'm like, oh, okay, so you go out, and you go in the elevator, and they take you up, and then you come out, and then there's like, they they call it like a revolving ceremony or and it just goes on all day. It's like a permanent ceremony that's just happening. And so they'll push you into the room, and you're there with a bunch of other people, and they give you, like, a little welcome pack with a flag and leaflet and a letter from the President. And then they they're playing that song on the TV. They're proud to be an American song.

Scott Benner 45:20
No one was waving a flag, though, like in the video, no.

Katherine 45:23
And I'm like, Can my can my husband come in? And they're like, oh, no, sorry, no one can come in. It's just no, you're just gonna stand here. And so you just stand there with whoever else is in the room, and you all just sort of mumble this oath together, the vow together, and the Pledge of Allegiance, and that's it. And then then they're like, here's your certificate, and you have to hand in your green card.

Scott Benner 45:46
And then the pledge allegiance isn't part of the test.

Katherine 45:51
No, I don't think so. I think you have to say that at the end. But I don't think they it might be included in the question. So they ask you any of these, like, 100 random questions, yeah, like so it may be one of the questions that's in there.

Scott Benner 46:05
Could you knock out the Pledge of Allegiance right now, if I told you to sure you can pay me too. Do you know it? Yeah, go ahead.

Katherine 46:15
I pledge allegiance to the question.

Scott Benner 46:18
Maybe not. I don't do the flag of the United States of America, right and to the republic for which it stands, one nation under God, indivisible with liberty and justice for all. Wow. Yeah, that's really good. Every damn day of my life in school, they made us say

Katherine 46:32
it. Oh my gosh, wow. You did that every day at school, every

Scott Benner 46:36
day, every day you got you had to be at your desk at a certain time. Sat your down. Five seconds later, you got your back up again, found the flag, turned to it, hand over your heart. I pledge allegiance to the flag the United States of America, and to the republic which it stands, one nation under God, liberty and justice for all. Boom, kindergarten, first, second, third, all the way through 12th grade.

Katherine 46:56
Oh my gosh, I guess, I guess it's been a year. So, yeah, I

Scott Benner 46:59
haven't said that in 40 years, and it just flew right out of my mouth. Yeah, and my memory is horrendous about stuff like that. Like, if you asked me any of the kids names that I went to school with, like, I like, I know, like, 10 of them. Oh, my God, I don't remember anything I learned that's for certain.

Katherine 47:19
Like, can you ask me, like, 80 song lyrics or something,

Scott Benner 47:22
by the way, that I'm terrible at Did you hear it? We put up an outtakes in blooper short episode the other day where I got it into my head to sing, she's gone by Hall and Oates, and realized I don't know any of the words, except for, she's gone, she's gone.

Katherine 47:38
Oh yeah, I don't think I know any of the words to that. I mean terrible or something. I could maybe do that.

Scott Benner 47:45
My wife will get in the car with me and she'll go, this is one of your favorite songs. You don't know the words to it. And I'm like, No, I know. Like, and then I tried to have this conversation with her, which she laughs at me for. But there's a thing where some people hear song lyrics as music. Oh yeah. So I don't really always know what they're saying. It's more like a it feels like a collection of like the musicality of it, like the words are sort of meaningless to me. It's more about the beat and the rhythm and everything like that.

Katherine 48:16
My husband's like that. He's He's a musician. He plays guitar and he but lyrics are kind of not that important to him. I love lyrics. He He loves music, so it works. But, yeah,

Scott Benner 48:29
I hear you all right. So we got diabetes. We're a little worried about everything at the moment, but I imagine that will come together for you over time. Yeah, we're thinking maybe we'll check on the kids, but we don't know they're also a little older than older, they might tell you to go to hell, right? They might. Yeah, no, you might. One of them might say, Look, I don't want

Katherine 48:48
to know that. Yeah, they're all busy. I mean, they're they're all sort of doing their own college things, and so, yeah, they kind of have their own lives.

Scott Benner 48:58
Mom's a bummer. She called me at school. She wants me to get my blood test to see if I might get type one diabetes one day, they're probably like, oh,

Katherine 49:05
yeah, that sounds about right.

Scott Benner 49:09
Other autoimmune in your extended family.

Katherine 49:14
That's a good question. I don't really know. I'm sort of a straight I never met my father and my mother died quite young, actually, from alcohol issues. Yeah, so I don't really know my grandparents were fine. I mean, very my grandmother has type two now, but she's in her 90s, so she didn't get that till quite late in life.

Scott Benner 49:44
Did you grow up with them? With your grandparents? Yeah, oh, I thought this was going to turn into a Dickens novel. Oh, I was in the poor house, sir, and I didn't I wasn't sure where that was going. But mostly, your grandparents raised you from what age it.

Katherine 50:00
It is a bit Dickens. And i My father left when I was a baby. My mother was only 16 when she had me, so they kind of my grandmother pretty much raised. Actually, both my grandparents raised me pretty much from a baby, but I went back and forth a bit. So I actually, I grew up on an island, and my mother moved to an even smaller island, and I was sort of to and fro between the two islands for a while, sort of living with my mother and then living with my grandparents. But I talked to my grandmother this morning, actually, so she's she's in her 90s, and she moved over here, as I say, she was kind of the reason I moved to the US, because she wanted to study Montessori education, yeah, so she did that. But then her student visa ran out, so she ended up going back to the UK. And she has another daughter there, my aunt. But I actually, yeah, I talked to her this morning, so I chat to her all the time on FaceTime.

Scott Benner 51:00
So how old was your mom when she passed? She was 43 Wow, my gosh, but you weren't particularly close with her. She more like a friend from high school.

Katherine 51:12
Yeah, it was a bit like that. It was a bit sort of like she Yeah, I was more stable when I was with my grandparents, and so I kind of went up and down with my mother, and she she was just dealing with her own issue. She was in and out of like rehab and trying to get sober, and it was always a struggle for her. And so it was, it wasn't an easy relationship. Yeah, I was sort of dealing with being a teenager, and I don't think I was as sympathetic as I wish I had been, no kidding, hindsight.

Scott Benner 51:43
Yeah, some hindsight there. Well, I mean, that's, that's all you're going to have is hindsight at that age when you're when you're put in that situation. But if we brought Dickens back now and let him start writing about modern life, those stories would sound so much different, wouldn't they? Maybe, yeah, maybe not, though, who knows? Maybe the, maybe the main themes stay the same.

Katherine 51:59
I think so. I think all the big stories in life, they never change in some ways, which is kind of reassuring, I guess.

Scott Benner 52:07
Can you tell me? I know this isn't why you came on, but what kind of an impact did your upbringing have on how you raised your kids?

Katherine 52:14
Oh, that's interesting. I'm a very I would say, let's say fair mother. So So I I never been a very pushy mother, right? I put them in Montessori schools when they were little. And then my son, now he's home schooled. And really, he does School of Rock. He was doing Coda school he does, and now he's doing community college. So I actually pulled him out of school during the pandemic. I wasn't very happy with I felt the school wasn't doing a very good job. They kind of fell apart during the pandemic, and didn't have enough teachers, and there was a lot of things going wrong. So he's been home schooled, and now he's doing community college, and he's a singer, he's a musician, and he's, I think he's hoping, at the moment, he's looking into doing firefighting or being an EMT, and I think that would be pretty cool for him, awesome. But my oldest is, she's like, literally, a rocket scientist. She's doing about start her Master's. She just graduated with an aerospace engineering degree. Wow. So she's about to do her masters. So I guess it worked with her. It did like she's done really well. And then the middle one starting, she's going to be doing writing, literary arts this year.

Scott Benner 53:32
Well, I said, if they're happy, it went well for all of them, right?

Katherine 53:35
Yeah, I think so. I mean, I don't think I'm the typical mother. I've sort of tried to run off to be in the circus for a bit. And I've been an entrepreneur for many years, and the ups and downs that go with like, I literally, when I moved here, I made a living selling on eBay, and then I just started teaching other people how to do that, and built a business from there, really. It's, yeah, it's pretty fun.

Scott Benner 54:01
So tell me a bit about that, though. Like, because I see this all the time, you know, I pay attention to social media a lot, trying to figure out, like, what other people in different segments are doing that maybe I could, you know, co opt or steal or try, you know, oh, we should talk, yeah, yeah. Because I never, like, most of it never goes well, you do see that thing that happens, right? Like somebody has some success early, and then if they can get to the teaching part of it soon enough, then they become the thought leader on the thing. And now their new success is just telling somebody else you can be successful. This is how I was.

Katherine 54:36
That's, yeah, I guess I was kind of kind of been on that so, yeah, so what happened I was I didn't really have a source of income after my son was born, my grandmother moved back to the UK, and I was just kind of like, okay, I really need to figure out what I'm going to do with myself here. And I happened to run into someone who was re selling from stores. From shops. And I don't know how long we've got this a bit of a

Scott Benner 55:05
story. I want to hear it, but we can end on this. I'd like to hear this go, please. Okay, sure.

Katherine 55:09
So I was buying things from yard sales, estate sales, selling those on eBay. And then I happened to be out with my husband, and we ran into one of his old friends in a shopping mall, and he was coming out victoria secret, and he had bags of bags of stuff. And I'm like, Does this guy have a lot of girlfriends? Like, why is he buying all this stuff from Victoria's Secret? And Isaac's like, this, my old friend here. We should say hi. So I said, Okay, let's say hi. And he said, Actually, what I'm doing is reselling this stuff. And I got really fascinated by this. I was like, wait, you can buy things and then resell them on eBay. And I talked to him a little bit, and then I went and did some research, and I decided to try it. And so what I did, I went to Nordstrom Rack, which is, and there may be people who've heard my story on YouTube.

Scott Benner 56:04
And are you more famous than I think you are? Catherine, what's going on?

Katherine 56:08
I do some videos.

Speaker 1 56:10
Okay, go ahead, keep going. I'm with you.

Katherine 56:12
I wouldn't say famous, but in Yeah. So what I did my eyes. Had bought me an iPad, and I went, I started looking up everything that I could see in Nordstrom and all because, you know how, like Nordstrom Rack, everything's on discount, and I found that the thing that that had the best discount was Hunter rain boots. And I realized that these were selling for about $50 more on eBay. So what I would do is I would make a list of all the sizes and colors that all the Nordstrom racks in my city had, and then I would list them on eBay, and I was more or less like selling them out of the shop,

Scott Benner 56:54
yeah, so you were selling them without buying them. Yes. Oh, that's brilliant, isn't it? Because then you didn't have to put out any of the money. Basically, basically you said, you said to people like, look, there's stock at the store. I can see it online, right? This thing costs $20 if you give me 50, I'll go get it for you and ship it to you.

Katherine 57:16
That's kind of like that. I literally just put them on eBay and just hope for the best and just kept track.

Scott Benner 57:21
Why wouldn't they go to nordstromerac.com and buy it themselves?

Katherine 57:25
Oh, because I was actually in the store. I was, like, physically in the store, hunting food, and I just drive around

Scott Benner 57:31
the store. Oh, it wasn't that. It wasn't something they could have done online. They had, they would have had done, yeah, you were doing work, but that was the work you were doing. You were going out and basically taking stock of what every place had that what you saw that was popular online,

Katherine 57:45
yeah, and so I kind of built this up, and then I discovered Amazon and selling on FBA with Amazon. And so I started doing that. And then I started teaching, because I can't keep my mouth shut about anything. So I started teaching it on YouTube and talking about it and saying, Hey, this is what I've been doing. And people like, Okay, can you show me how to do this? And so then I moved into, I created a course about it, and then I sold the course. And people were like, This is really fun. This is actually making a huge difference. I'm actually making money doing this, Wow, and so. And then my husband left his job, and he's a programmer, so he built the course platform for me. And then from there, we started building software together, building courses. And now we mostly teach people how to make books. We have software for that, and people publish their books on Amazon, and it's called Low content books. So a lot of people make, like notebooks, exercise books, guided journals, things like that. And we show them how to put those on Amazon and get them selling. And so it's, it's been a really fun business. I've been doing it for over 10 years now with Isaac and so, yeah, that's, that's our

Scott Benner 59:03
thing. That's really awesome. Good for you. That's great. But that's like, that's the most American thing I've ever heard in my life.

Katherine 59:10
We hustled away from the ground up. Yeah, for sure,

Scott Benner 59:14
yeah, wow. How about that? Oh, I appreciate you sharing that with me. Thank you. And I will take a pause after we're done recording and see if you have any thoughts for me. But for

Katherine 59:22
sure, if you're, if you're any interest in sort of books or notebooks, anything like that, like diabetes, books are huge. So isn't

Scott Benner 59:30
that interesting? Are they really? Yeah, I think a lot of

Katherine 59:33
people want to do like log books to keep track of things. So if you can find a unique spin on that, or a unique way to log things, especially, I think the tip I'm finding at the moment with people making planners is to put an emotional connection in there. Like, how are you feeling today? Mentally? Not just like, how are you sort of medically doing? How many units did you use today? But like, how. How are you actually feeling? And I'm noticing this in even in like kids homework planners. It was interesting. One of my friends the other day, who's a teacher, she shared a picture of the planner that their kids have at school, and it in the old days we had homework books, and it just said, this is the stud the subjects I'm studying, and this is the homework I'm doing. And this planner had, but how am I feeling today? And it had little emojis that you can circle. And I was like, this is 2025, I think it's a little bit nicer now, like people actually care more about how kids are feeling. And I thought that was really cool.

Scott Benner 1:00:40
Look at you out there doing stuff I didn't even know existed. That's pretty awesome. It really is. I appreciate you doing this very much with me. What made you want to come on and be on the podcast?

Katherine 1:00:49
I used to do a lot of improv, and in improv, they say yes, and like, if someone gives you an opportunity, you say yes, I'm going to do it. And I'm trying to get back to that instinct. I think, I think, honestly, getting a little bit sick with all of this, with with diabetes and everything, I think I kind of lost a bit of my yes and and now I'm trying, like, if I, if I see something like, you put it out there. I saw a post and you said, Hey, I'm looking for people to be on the podcast. And I was like, Yeah, I want to do this.

Scott Benner 1:01:26
Say hi. Yeah, that is awesome. Well, I'm glad.

Katherine 1:01:29
I'm really grateful, and I'm really, really grateful for the podcast and for your group as well.

Scott Benner 1:01:35
Oh, well, I appreciate that it's that you're saying something nice about it and that it's helping you. I'm really glad to know that it's been valuable

Katherine 1:01:42
for you. It really was and really reassuring.

Scott Benner 1:01:47
Well, I think that as time passes and your insulin needs change, you're going to find a lot of value in maybe the bold beginnings, Pro Tip series, some of the other series that are available for the podcast. So they're in the feature tab of the Facebook group that you're in if you want to check them out right now, there's a lot of lists. A lot of lists there. Sure I would check all of those. I think, I think you're gonna, you might see some stuff that'll really help you. So thank you so much for doing this with me. I really do appreciate it. Hold on one second for me. Okay. Okay. You

this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox a huge thanks to us, med for sponsoring this episode of The Juicebox podcast. Don't forget us. Med.com/juicebox, this is where we get our diabetes supplies from. You can as well use the link or call 888-721-1514, use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, you

Speaker 1 1:03:20
Hey,

Scott Benner 1:03:22
thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app sometimes. That's why they're also collected at Juicebox podcast.com go up to the top, there's a menu right there. Click on series, defining diabetes, bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny, mental wellness, fat and protein, defining thyroid, after dark, diabetes, variables, Grand Rounds, cold, wind, pregnancy, type two diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com, if you're looking for community around type one diabetes. Check out the Juicebox podcast, private Facebook group Juicebox podcast type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast type one diabetes on Facebook, the episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com.

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More

#1641 Lyla's Story

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

Trigger Warning: John is here to tell us about his daughter, Lyla, who was recently lost to undiagnosed T1D. If you're not prepared to deal with the emotions that are going to come with a raw and honest conversation about losing a child, please consider skipping this episode.

UK Petition: https://petition.parliament.uk/petitions/728677

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
John's story is today's guest. He's here to tell us about his daughter, Lila, who was recently lost to undiagnosed type one diabetes. John will share stories about Lila and his desire for this not to happen to someone else's child, if you're not prepared to deal with the emotions that are going to come with a raw and honest conversation about losing a child, please consider skipping this episode

while you're listening. Please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you're a citizen of the United Kingdom, please consider signing John's petition for funding so all infants are offered type one diabetes testing in routine care. I'll have a link in the show notes and a link at Juicebox podcast.com if you're interested in learning more and adding your signature.

Today's episode is sponsored by Medtronic diabetes and the contour next gen blood glucose meter. Learn more about Medtronic devices at Medtronic diabetes.com/juicebox and dig into all the contour has to offer at contour, next.com/juicebox

Speaker 1 1:41
you Hi,

Scott Benner 1:53
Scott.

John Story 1:54
My name is John story, I'm from Kingston upon hull in England, in Yorkshire, and I am the father of Lila's story,

Scott Benner 2:02
John, it's nice to meet you. I really do appreciate you doing this with me. Thank you. Yeah, that's right. So it's a pleasure to have you here. I'm sorry. I think we're going to probably just jump right in any other small talk will, I think seem trivial very quickly. Why don't you tell me why you're here and what led you to this place? Right?

John Story 2:21
Well, the reason I'm here today and again, thank you for having me on the pod. Like I said, I've heard good things about you. Thank you and the Juicebox podcast and you know, we send our love from across the pond, but basically, the reason I'm on here today is to discuss Lila, our beautiful daughter. I do apologize if I get emotional during the pod, because it is still quite raw. So you might want to come with a trigger warning.

Scott Benner 2:45
Listen, I'm going to cry if you cry. John, just so you know. So how long ago did all this happen? Well, basically,

John Story 2:54
let me tell you about Lila first. I think it's, I think it's important to let people know. Sort of person Lila was born on the 11th of April 2023 a day before my birthday and a day after her Auntie's birthday. She was lovely, beautiful. She was very advanced. She could count well into her 20s. At the age of two, she was stringing sentences together. She was kind, caring, sharing. She loved all creatures, even the creepy crawlies like spiders and things like that. She loved flowers, sunflowers, pink and yellow roses. And she got all the caring and compassionate side from her mother, my lovely wife, Emma. But she also had a sassy side to her too. She was very independent. She was very good at sussing people out, you know, checking them over before she, you know, let them in, sort of thing. And she had a I don't give a sh 1t attitude she got, definitely got that off her father. She was, she was adorable, and, you know, she,

Scott Benner 4:05
she wouldn't hurt a fly. Lila turned to, obviously, in April this year,

John Story 4:14
and in the last week of April, going into May. And so from the 28th of April, we in the in the night, we noticed that Lila had woke up in the middle of the night, and she was, she was a bit rosy cheeked, you know, and Emma checked her over, and it seemed apparent that she was getting her back teeth coming through. That's why she was a bit sniffly and a bit rosy cheek. So we gave her a bit of, don't know how what you guys have in America, but over here, we call it Cal Poly, which seems to be the answer to everything. It's like a children a baby's children's paracetamol. So give her a bit of Cal Poly, and she fell back asleep again. She woke up on a Tuesday, right as rain. Had some breakfast. And went to nursery. And she'd only started nursery, or kindergarten, as you guys call it, on the 22nd of April. She went to nursery. She was absolutely fine. Came home again, fine, went to bed, went to sleep, gets up on the Wednesday, again, she's fine. When she came home, we noticed that she started having a few more wet nappies or diapers, and when she was sat with me, I noticed at one point that a nappy had burst. I thought that's unusual.

Scott Benner 5:37
She's weeing quite a lot. We

John Story 5:39
get to the fair and she looked, she looks quite tired, so we had on the side of caution, and thought, right, well, if she's like this, in the morning, we will take her into nursery, and you know, if she hasn't improved, we'll, we'll call the doctor, basically, right? She gets up on the Thursday, she gets up. She didn't really want anything solid to eat. And we thought, well, that's okay, because she's with she's teething and all the rest of it. So she had some yogurt and a bit of fruit, went off to nursery, okay, and seemed fine when she got dropped off at the nursery. And unbeknownst to me, my mum came home, because my mum used to pick Lila up from nursery and our son Jack. Our son, Jack's only four himself, and he's just started preschool. And my mum brought around the corner, and we always used to greet Jack and Lila as they came around the door with her. Ah, yeah. How you you know? Hi. How are you doing? You know. And then they both look at me and run straight to the mum and Lila came around the door, and I have to say, Scott, I was frightened. I saw her, and she'd lost weight, she'd look gone. And I was like, Nah, I won't swear, but I said, you know, said to Emma, and my mom said, Something effing wrong with her,

Scott Benner 6:59
and I'm the the biggest kind of

John Story 7:04
scaredy cat when it comes to my children. You know, ordinarily, if they bump the head or the trap the finger in a in a door, like, you know, like little kids do, I'd scream and go get that kid to hospital now, but for some reason, I just said, ring the doctor. She needs to get to doctors. We secured her an appointment for the following day. I have to be careful what to say, because she's got an inquest coming up on the 16th of September. But I know my mother and my wife took Lila to the doctors, and they explained the symptoms. She threw up three times that morning, you know, vomited three times, and the third time was in, actually, in the surgery. And my mother pointed out that's the third time today she's been sick. So obviously, Emma and my mum went in with Lily to the doctors, explained that she's having more wet nappies. She's been lethargic. She's not been a normal self. Obviously, she's vomiting. She hasn't had a bowel movement since the Tuesday, Tuesday night, and she appears to have lost weight overnight. And she's she's drinking a lot more. She's and my mother interjected and said she's actually asking for water. Now, what two year old asked for water. It's all about juice, innit. Now, I've had it drummed into me over the years say, don't look at Dr Google. Don't look at Dr Google. You know, I wish I did, because the doctor just checked the vitals and surmised that all she had was tonsillitis. We brought her home, Emma took her to bed quite early, but we made we made a decision that Emma would stay in bed with Lila in our bed, and I said, That's okay. I'll sleep downstairs on my recliner chair periodically as I carried her up to bed. Oh, that's another thing I forgot to mention. She stopped talking on the Thursday. Now I thought I was frightened to death at the time that she'd all of a sudden gone from somebody so bright and vibrant to someone that's gone completely non verbal. When we got told she had tonsillitis, it kind of changed our perceptions of care for Lila, because the doctor said if, if she hadn't got better within 24 hours, then call 111, which is like the quieter version of 999, or 911 you know, it's like ringing up. I've just got a concern, you know. So okay, and then they give you advice accordingly. We were relieved that we you knew it was translated, and she was prescribed something called amoxicillin, which is basically penicillin for kids. It's like that banana flavored stuff you get. We started giving her that, and then said, carry on giving her children's paracetamol. Obviously, what's, what's in children's what's children's paracetamol, full of sugar. I started carrying her up to bed. And. She started shouting, mummy, mummy, mummy. We thought, we thought, excellent. She's talking. She's talking again. She's, you know, she's articulating again. That's brilliant. Went to bed. I last checked on Emma and Lila at about 8pm and Lila was sleep. While Lila was sleeping, she was making a little arring noise, and again, we attributed that to the fact that she's articulating that the tonsils are hurting, but no more of it. Emma checked on her again at 10 o'clock, still breathing, still temp. Last checked on her at quarter two in the morning, still breathing, still temper. Up. I wake up about quarter four come to bed. About quarter past four in the morning,

Scott Benner 10:45
I got into the bed.

John Story 10:48
I moved later because she was like before she was sleeping in a horizontal position. I moved her from my nappy.

Scott Benner 10:54
For some reason, I lay in bed, and

John Story 10:59
next thing I know, I felt something cold against me, and I thought it was Lila's

Scott Benner 11:04
milk bottle, but

John Story 11:07
it wasn't. It was her arm, and she was freezing. She'd already gone. So I think in that three quarters of an hour where, three quarters of an hour where Emma had last checked on her, I think she'd slipped into a coma, and just passed. Even our dog was in the room. We got a border we got a border collie. We know if Lila would have suffered at any point, the dog would have been leaping on the bed, jumping all over Emma to get her up, you know.

Scott Benner 11:30
And, yeah, she just literally passed in very quickly, yeah. So, you know, we, John, take us. Take a second. It's okay. You can collect yourself. It's fine. I want you to know that when, when someone reached out to me to have you on I had no idea this was also fresh in your life. I really didn't. Are we talking about five months ago?

John Story 11:57
Just over four months now, four months ago? Okay, yeah, yeah, she she passed away on Third of May. We even said when was at the hospital, because whilst I was trying to resuscitate her, we even said, you know, when she was officially pronounced, asked how, when we when my wife and my mother went to the GPS and said she's got this, this, this, and this, did she only surmise it was tonsillitis, yeah.

Scott Benner 12:30
And obviously, that's what, that's basically what happened. Naturally, we're devastated. But Hey, John, this is more common than you think. I know that obviously type one diabetes is not a thing you were aware of prior to that. Absolutely not, yeah, but I can tell you that misdiagnosis is at this point are fairly common, and even the things that you describe that you saw, but you know, didn't know what to make of it. All that is incredibly common. I know that's I don't believe anything I'm going to say to you is going to be comforting. But no, no, yeah, but I can tell you that. You know, my daughter was diagnosed when she was two, and, yeah, just after her second birthday. As a matter of fact, my wife and I saw signs, and, you know, we look stared at her for a long time, too, weight loss, wetting her diapers. She's like, voraciously hungry, but not going to the bathroom, like anything you probably experienced with your dear Lila. I imagine I experienced with my daughter, and my wife did too, and we just happened to have a moment where it just struck us that we thought it was diabetes that was really it. Yeah, we didn't know either. And took her to the hospital, and they told us this, that, you know, she was very probably 24 hours away from where your daughter was, and to later say that I did something right or you did something wrong is ridiculous. We got lucky and you didn't.

John Story 14:11
We were, you know, yeah, that's, that's part of the, one of the things that resonated with when I first heard about you, and the reason that you set up the podcast was because Lila was three weeks into a second birthday. And yeah, and I just, I can't believe how people just don't actively listen anymore when you display and there's so many stories of you're an overprotective mother, or you can't have diabetes because you're fit or you're well, or you can't because there's no history in the family. That's, I mean, that irrelevant question that GPS ask, is there a history of diabetes in the family? Well, 80% of newly diagnosed people with type one diabetes are. Babies to it themselves. You know, it's just one of them things. It's you ever get it or you don't, you know? I mean, it can run in families, obviously, but 80% of new cases are like that. And what happened, Scott was in the aftermath of flyers passing, you know, I said, I'm, I'm gonna sorry. I said I'm gonna fight for every Barber of my being to for change, because all of a sudden it got so strange online, on Facebook and things like that, it almost became like a me too. Thing people was reaching out and saying, Look, same thing that happened to us. And the only difference between you and my daughter or my son was when I woke up in the morning, my child was barely breathing.

Scott Benner 15:42
Yours just, yeah, it just happened faster or bad time, even just that you were asleep. I mean, John, there's, there's no way to make sense of it. Really, it's

John Story 15:53
well with with Lila as well she got, we found out on the interim death certificate that not only did she have undiagnosed type one, and obviously she died of diabetic ketoacidosis, but she had a gastrointestinal bleed and covid 19. So we think what's happened is that sniffle that she had on the Monday and the rosy cheeks, we think that was the start of covid. And what's happened, we think, is it's attack to pancreas, because you know what covid can do. It can attack any part of your body. You can get cases of people getting covered, and it just doesn't touch the sides. And you're like, what's this? But then you can get one case of covid, and you can just attack the wrong part of you. And then it's critical. So with Lila, it happened so rapidly. But the people that have been reaching out to me, this is just from people in the United Kingdom. I've had about 220 emails so far. Of them, 220 emails. Only two have been diagnosed the initial point of contact with the GP. The rest have been diagnosed in critical care.

Scott Benner 16:59
Yeah, that's pretty much how it works. And there's, you know, there's, it's, it's such a tough thing to talk about, because as you're sitting here, probably all you can think about is somebody would have just checked her blood sugar in the office. You would have known days before, and they would have very likely been able to help her. And you're going to hear people make the counter argument, which is, you know, for every kid that comes in in your daughter's situation, there's probably 1000 of them that don't have diabetes. And then, yeah, yeah, and it's not of any comfort to you or or any reason not to do that finger stick and help the few that are in that situation. I've, you know, had this conversation over and over again with people over the years, and I can see both sides of why it happens and why it why it doesn't happen, or why it should happen and why it doesn't happen. Yeah, I can't tell you how sorry. I mean, honestly, all I can think about sitting here is giving my daughter a hug when she gets home, you know? And, yeah, even that feels terrible to say out loud right now while I'm speaking to you, today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox the contour next gen blood glucose meter is sponsoring this episode of The Juicebox podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your Insurance Company. That's right. If you go to my link, contour next.com/juicebox you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meijer. You could be paying more right now through your insurance for your test strips and meter. Then you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that, but what I can say for sure is that the contour next gen meter. Meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juicebox, and if you already have a contour meter and you're buying test strips, doing so through the Juicebox podcast link will help to support the show

John Story 20:16
now, Scott, I've been saying I've been saying that to people every time I've had an email come through it the so the emails that I get sent us are so traumatic for themselves, and they're incredibly brave for writing to me, you know. And you know, I keep asking people just just send them, because change needs to happen. And I do say to them, just give your daughter or your son a massive cuddle from us, you know,

Scott Benner 20:39
I agree, a little finger prick cost pennies.

John Story 20:47
Getting diagnosed in critical care costs hundreds of 1000s, you know, to the National Health Service. God knows what it's like in your country where your insurance system and everything you know how much I mean. I mean money costs nothing. Money means nothing when you saving your child, obviously. But I think what the UK government don't understand all the NHS don't understand is, you know, if you do this little finger prick test and you get, you get people out there that say, well, it's traumatic to the child. Give over. Don't be silly. You know, give them a lollipop afterwards. You know, they'll be, you know that they'll be absolutely fine. It's, it's, you know, you get, you get your your jabs when you're a baby that makes them cry. What difference does it make? Just a little finger prick. Not that anybody wants type one diabetes, obviously. But the earlier someone gets diagnosed, the easier it is for that person to manage the condition safely. You know, if you diagnose a DKA, it can be, it can be much more difficult to manage your blood glucose levels, and not only that, it can cause organ failure, developmental delay. I mean, I'm a rehab officer for visually impaired people, so basically, I help restore the skills of people with visual impairment, and obviously one of them conditions is like diabetic retinopathy or maculopathy, people don't understand how serious it is. And it's not just a physical impact it has on people, the patient themselves, but it's the emotional impact

Scott Benner 22:19
of going through on the

John Story 22:20
person and and the family is the ripple effect it causes, and the parental guilt, it's horrible,

Scott Benner 22:28
right? Yet, no, there's, there's no argument for not knowing sooner. Knowing sooner is just always going to be better. So John, if we can, I don't know if we're really pivoting, but, but to to leave her story there for a second, and we'll come back to it. And what you're trying to accomplish. Would you mind if I asked you some stuff personally, I'm I'm interested to know. I mean, you're a pretty young family, right? You had a four year old and a two year old. How long have you been married? How old are you? How old is your wife? Funny story, just I'm late. Really strange.

John Story 23:00
Actually, I'm Emma on a dating app called Bumble. I don't know if you've heard of it, I have. We first met, we went for a coffee on our first date. We got chat in we we really enjoyed each other's company on the way up the coffee house, I said to Emma, do you mind, you know, do you mind if I see you again? And she said, yeah, yeah, I'd love to. So don't you mind if I give you a kiss, you know, on the cheek, a little peck on the cheek, sort of things went, Yeah, okay. And at that point, I slipped on the doorstep. I fell forward, and I had butted. I thought, There's no way she's No way. She's gonna say no now. And then we, obviously, we fell in love. And then we Jack came along in 2020, he was a covid baby, and there was a lot of trials and tribulation with that as well, because I couldn't be present at the scans and things like that. So that was a bit heart wrenching. But when Lila came along, found out Lila was pregnant. Sorry, Emma was pregnant with Lila when I was about to start university to do a degree apprenticeship in rehabilitation visually impaired. I asked Emma, do you want me to defer? She went, No, you'll go for it, because it's for our family. Lila came along two months before me and Emma got married in 2023 so she was the youngest bridesmaid in town. And, yeah, the dynamic. It was it. It was the perfect dynamic. I mean, our children have wanted for nothing. We've done nothing but protect them throughout their lives. You know, whenever the chips are down, we're there for them,

Scott Benner 24:36
then something comes along that you just can't really you can't protect them from Exactly, yeah, I mean, Emma, at the moment, she's,

John Story 24:49
I mean, Emma lives with anxiety. Diagnose anxiety. She's usually the crier of us too, you know, she's the one that does the crying. You know, I. You only have to say boo to her sometimes she's so consumed with anger at the moment.

Scott Benner 25:06
Well, that's my question to you, really is that, how has this impacted you and her and

John Story 25:10
Jack, in all honesty, it's made us stronger as a group, as a family dynamic. Jack, he's going to get some early help from the local Family Hub center, Jack was asking questions when Lila first passed, about where's Lila's body, where's Lila's head?

Scott Benner 25:30
All right, the poor lad, the poor boy, doesn't

John Story 25:36
know what to say. I mean, when we when we had to sit him down, I sat him on my knee, and then we sat him in between me and Emma, and we said, We've got to say something to Jack now that's going to impact him for the rest of his life. So I formed my feet, and I thought I did okay, but said, Look, you know, when the ambulance people took liners to hospital said, unfortunately,

Scott Benner 26:01
she she was too

John Story 26:03
she was just too little, and a little body, a little heart, couldn't take it anymore. I said, before she went up to heaven with the angels, she told us something on the way up. She said, Oh, what?

Scott Benner 26:17
I said that she's left. She's left, mommy, her eyes, um, she's left daddy, her heart, she and she's left for you.

John Story 26:28
Her courage. She said, What's courage? I said, bravery to be brave. And, and she's left you where shadow she's always with, yeah, all

Scott Benner 26:40
right, John, you did a good job. Man, that was great. That's

John Story 26:42
That's lovely. I know, I know. I mean, I don't know if people believe in God or Heaven or anything. That's people can have their beliefs. That's absolutely fine. You know, I've got no qualms with that. But I think when you're a child, you need to teach that child that there is a better place to go to, and you know, and you also teach them to respect the police and respect people in uniform, like the fire service, you know. And you know you Jeep at your doctor and and things like that. And it was only until because Jack thought she'd died at tonsillitis. A week after Lila died, he got the chickenpox, and the first question he asked me was, daddy, yeah, am I going to die? Oh, jeez, I said, No, you're not gonna die, son, you're not gonna die. So we we we told him when he broke off from nursery kindergarten, we sat him down and we explained to him that Lila didn't die of tonsillitis, that she did have tonsillitis, but she died of something called diabetes. And I tried to explain what diabetes was in layman's terms, but to talk about Peter cells and pancreatic failure and things like that to a four year old is no use, no ornament. So I just said he had, she had so much sugar and she couldn't burn it off, you know, because that was the only way you could really explain it to him, with him being four years old. Well, yeah, I mean, there's

Scott Benner 28:15
no, I mean, there's not a lot of good ways to explain something that's serious or finite to a four year old. I think he did a nice job. I mean, I'm sure it's going to be a thing that is going to come up over and over again. You're probably going to have to redefine for him as he gets older. And truth be told, you might have different perspectives as time moves on as well that you'll share with him.

John Story 28:37
Indeed, indeed. I mean, we didn't say at the time that. We just said that the end of the day, when we went to the doctors, the doctor didn't spot that she had it. And, you know, I did say that doctor was naughty or anything like that, you know, right? Well, I didn't want to play a blame game or anything like that, because I didn't want him having I didn't want him to lose faith in the in in the health system.

Scott Benner 28:58
But do you do you have those feelings? John, does your wife feel that way? Yeah, we do at the moment.

John Story 29:04
Yeah, we do. We feel badly let down. Obviously, again, we can't go too much into it, because we've got the inquest coming up, but we feel that. I don't know if you know much about the healthcare system in England at the moment, but primary care, that's your GPS and your district nursing and things like that, it seems to becoming more of a business now than what people actually signed up for, you know, which was to work with people with dignity, empathy and, most importantly, care. I just think that the country itself were, you know, across the pond we're running, we're only a tiny island really, but we've got 80 million people living in it. You know, that's a lot of people for a small island. And I think, as time's gone on, the NHS is a wonderful system, but I genuinely think it's broken because we haven't got enough infrastructure there in. A structure there to support the needs of people anymore, and I think that reflects when you're visiting a doctor, because it's like, I don't know if you're like me, Scott, but for me to go to the doctor myself, personally, I've got to have about four or five things wrong with me before I go, because I'm pre I'm a proud man,

Scott Benner 30:21
but if you go there,

John Story 30:25
you talk about more than two things. The basically talk to the hand, the face. Ain't listening. It's like, I can talk to you about these two things today. If you want to talk about the others, you need to book another appointment now. And that's quite a poignant comment, because the signs of type one diabetes are four T's. You've got four things going on, you know, and particularly with children, you can't mess about with children. You can't grant a child a seven minute appointment, because that's on average, that's how long you are in with the doctor. Now, in Indy, did Lila have tonsillitis? She did, but this is the irony. She was prescribed penicillin for tonsillitis. Now, penicillin is an antibiotic. It's to treat bacterial tonsillitis. She actually had viral tonsillitis.

Scott Benner 31:15
Yeah, they don't know. They're just guessing when they do that, if they don't think, if they don't do the test. So you think the doctor saw the tonsillitis and was like, Well, this is obviously the problem, and just didn't look

John Story 31:25
any further. I'm satisfied. Yeah, yeah, I think she saw that. I'm satisfied that she's got that. I mean, she checked her vitals, you know, she checked her oxygen levels and things like that. She said that a pulse was a bit fast, but that's normal if she's got a virus or what have you, but looking back now, I've one of lions godfathers. He was a medic in the paratroopers, and he said, the reason that we know, we now know that their pulse was getting faster because she was going into diabetic shock.

Scott Benner 31:55
Yeah, the ketoacidosis is there? Yeah, yeah, the DK is it's. It's a devastating thing. I just interviewed a woman recently whose daughter, even after they finally did figure out that she had diabetes, and she was on a week long journey like you were, where they kept missing it. He has permanent damage now through her esophagus. And you know, she was, she was vomiting up dead tissue from the dka, and it's, it can be devastating in many different

John Story 32:23
ways. Send my love to that family will. Yeah, of course, of course.

Scott Benner 32:27
So John, I mean, you're in the middle of your grief, your wife you described as angry. Is there something you're trying to do with all this? Like, I mean, I don't understand. I mean, you are in the position that every one of us finds ourselves in, we don't know what we would do if this happened to us. Right? So what is it you're doing with all this, the grief and the anger, and I'm assuming the hopelessness that you feel right now, where you're trying to focus it,

John Story 32:51
I'm trying to turn it into a positive I think Lila would want me to fight for the children of the United Kingdom, if not the world. I think the world needs to know about Lila's story, because if it's happening in the UK, it must be happening in other places. So basically, I've, I've started a campaign called Lila's law in the United Kingdom. I've just noticed as well recently that there's another, there was another Lila's law campaign going on in America is over something really horrible and harrowing that happened to a child in the United States. Completely different subject matter, and I won't go into that, so you can google what's going on there. But, but basically with Lila's law, it would ensure that routine diabetes testing, urine and blood for children presenting with relevant symptoms of the four T's, any of the four T's, because if you look, I don't know if you have something similar in the in the US, but there's something in the UK called fast. It's symptoms of stroke. And if there's display in any one of them, symptoms of fast, F, A, S, T, face, arms, yada yada. Any one of them symptoms, the doctor goes straight to hospital with you. Why aren't they doing that with other things? Type one? Yeah. And for some reason I think, look, not that type two isn't dangerous, but I think a lot of the focus is going on to type two now, because of the obesity rates and everything. There's a lot more people getting Type Two Diabetes now, and I think it's putting type one to the back of the queue. We know that type one, you've got to act fast with type one, because it's a silent killer. You know, Lila's law would also ensure greater awareness and adherence to what we call NICE guidelines among healthcare professionals. So like every practitioner has guidelines, the tragedy is the don't tend to follow them or protection of vulnerable children who cannot articulate their symptoms. I mean, if looking In Lila's case, she was bright, she was articulate. But we know. Know that the reason she stopped talking on the Thursday was because she was desperately trying to reserve her energy. Yeah, I knew nothing about type one diabetes before lighter pass. I learned very quickly afterwards. You know, we are also advocating for inclusion of type one diabetes information in what you call the Red Book. Now, the Red Book in the UK is basically what health visitors have and provide a mother with. And in that red book, it tells you about certain conditions to look out for. And I think because it it's becoming more pre type ones becoming more prevalent, I think it's important for them to include it in the Red Book. And the reason I'm saying things like that is because

Scott Benner 35:41
I think education around the matter is desperately poor among GPS themselves,

John Story 35:53
because I got told by a prominent member of the NHS that GPS in the United Kingdom diagnose an average of one persons in their career with type one, yeah, because

Scott Benner 36:09
it's so infrequent, or because they don't catch it as much.

John Story 36:13
The answer to that, I don't know, but put it this way, there is over 400,000 people in the United Kingdom, at the last estimate, living with T 1d of them, 400,000 people. 38% have been diagnosed at the point of DKA, that sort of that's just under half. It's not good enough.

Scott Benner 36:34
Now the

John Story 36:35
education around the matter in primary care is, is clearly not good enough. And also, I admit myself, I think education among the general public, your public, you know, that is not good enough and and it's there's also misconceptions around type one. You know, it's like, maybe it's because your child's eating so much sugar, that's rubbish. A child could live on sugar and not catch type one. But something quite key. I said to somebody recently was, the 4t is a wonderful concept. The only downside is it's quite some controversial but knowledge of the 4t is quite a tribal thing, in essence, because think the only people that really know about the 4t are those that are either directly or indirectly affected by the condition, and I think anybody that has no knowledge of it, it's all or doesn't have friends with it or family with it. You ask someone about the four T's, they're like, what's that? And that's why I think if you get education amongst the general public as well. When you send your child to the doctors, you say, My child is weighing more. My child is tired all the time. My child has lost weight and my child's constantly thirsty. I think my child has type one diabetes, and that plants a seed in the head of the doctor to say, I would like you to perform a test. So if you've got that work in both ways, the twins you'll meet, you know, but there's too much ignorance from GPS. And I've seen a lot of this. I might have repeated this already, but you see a lot of this from the emails I've received, it's like, well, you know, now you've got no history, so you will have it. It's just a virus. Stop being overprotective, you know? Yeah. And this has been going on to over 40 years, because one of my best friends has type one diabetes, and he went from a similar experience to Lila and me. He said to me, when Lila first passed, he said, I thought I was the only one, and it's 2025 Why is this still happening? It's not 22 it's not 1921 anymore.

Scott Benner 38:52
Your friend had a similar situation. Yeah.

John Story 38:55
Well, he what happened with him? He'll be happy for me to discuss it. He got many when he was 18 months old, he got meningitis, and he was admitted to hospital, spent three weeks in hospital, came home, and then a few months after that, he started displaying the four T's. It was kind of like, so it's just the after effects of the meningitis. It's just this, it's just that, Oh, stop being over protective, Mum. He's just getting over the meningitis. Blah, blah, blah, 10, and he was lucky enough to visit a GP who lives with the condition himself. He took one look at him and said, right, recognize that we need to get we need to get him to hospital, get him on a program of diabetes.

Scott Benner 39:34
John, it occurs to me because you're in England, and a lot of people will hear this in other places, four T's, toilet, thirsty, tired, fitter, right? Exactly? Yeah, okay. I just, we kept saying it. I thought maybe we should make sure everybody knows what it means.

John Story 39:46
Just to clarify, yeah, I did start a YouTube video shortly after Lyle the past, because I think it's, it's and you'll probably agree with this. Scott mentioned more about along the lines of looking out for the signs in babies and toddlers. Yes, if they're having more wet nappies, it might sound disgusting, but smell them. I don't know if you have something called Sugar Puffs in America, but they're like a breakfast cereal, and the smell the really sweet, almost like a popcorn smell. Sure if they're nappy or their diaper smells of popcorn. Just go to the hospital, if the breath smells like pear drops, take them to hospital, you know, like that sickly sweet smell on the breath. Now, we didn't even experience that with Lila, you know, the smell on the breath, but that's a sign,

Scott Benner 40:32
you know, that's one of the ways we figured out my daughter's situation. Was it? Yeah, the breath, you could just smell fruity. What is it? You actually smell like acetone or something like that? I'm not sure.

John Story 40:44
What is the basically, it's the ketones trying to get out the system, isn't it? You know? So, I mean, when Lila died, or HB one Ac levels was 89 over double the threshold, and her ketone level was at six. Now, the medical emergency is is three, you know, because it's on like, a scale of one to 10. I've seen people going to Makita on levels of eight, you know. And it's just crazy. So the YouTube video was mainly around checking for signs in toddlers and babies, because obviously they can advocate for themselves. So look out for these. And fortunately for you, Scott, you got that fruit you smell on the breath. Had you not got that? Yeah, you could be in a different situation yourself.

Scott Benner 41:31
John, I mean, it's it hasn't been lost on me for all those these years that we could have missed a couple of these things, and Arden's outcome could have been much different. But talking to you about it brings it, you know, very forward for me right now, sitting here thinking it's hard not to be hard, not to put myself in your position and wonder what would have happened if another day would have gone by

John Story 41:53
Exactly, exactly. And you know, your lovely daughters come out the other end. And you know, I hope she's thriving. She's doing pretty good. Thank you. How old she, how was she now? Scott, she just turned 21 wow, wow. She, I bet she advocates for T 1d, community as well, didn't she?

Scott Benner 42:10
She does her stuff kind of quietly about diabetes. I think maybe I'm the one that's more out front, but she's got her things she's involved in. It's also not a, not a huge part of her day to day life. You know, it's a thing she, I think, manages pretty well and lives with pretty well.

John Story 42:25
Thinking, I don't know, I mean, I don't want to speak on on behalf of or anything, but I think, I think with in her situation, I think it's she's probably never known any different.

Scott Benner 42:35
That's pretty true. It doesn't stop it from being burdensome, but definitely doesn't have a ton to draw on that isn't diabetes,

John Story 42:43
yeah, yeah. I mean, imagine I feel sorry for anybody that I have a degree of empath. Feeling sorry is not the right word. Jennifer is, but I have a degree of, I have empathy for everybody that that lives with the condition and and their daily struggle. But I can imagine, could you imagine getting it, getting it when he was, like, 14 or 15. And I think, you know, shocking for teenagers as

Scott Benner 43:06
it is, yeah, yeah. No, trust me, I believe that no matter what age you are, it's shocking and life altering. It just, it just really is anything chronic, which is now, you know, John, I mean, I'm certainly not a friend or somebody who has any right to be worried about you. But are you guys doing something? I mean, I love what you're doing, you know, for Lila's memory and for other people, but it mean, it occurs to me that, you know, if diabetes is a chronic illness that's going to take people a lifetime to deal with, I would imagine that losing a child is the same thing, right? This is not a thing that you're just gonna wake up one day and it's not just gonna be gone, yeah. How old are you? Did I ask you? I'm 44 now, 44 you have a long time left, you know, knock on wood, right? So you're raising Jack, right? He's four. So, like, how do you how do you make all this livable? Is livable the right word,

John Story 44:05
I'll be honest with you, Scott, I think if it wasn't for Jack, we'd have probably drunk ourselves into oblivion. Or Jack keeps us going. Our dog keeps us going. The love is still there in the family. You know we Lila comes to me in my dream. She never, ever came to me in my dreams, and then she does now, and we're going through counseling at the moment. You know, I wake up at key trigger points. The subconscious isn't turning off when I go to sleep. I wake up at half past two, which is when we believe she probably passed in the morning, I wake up at half past four, which is when we set off to the hospital with her, and I wake up at 25 past five in the morning, and she can't get back to sleep. But what we do is we have a ritual. We've got we've put a lovely little bench outside our our front garden. We've planted rose bushes for every. Morning we open a bedroom door and say, Good morning, darling. So we're just I know this might sound silly to you, but

Scott Benner 45:07
it's a big thing to us. So yeah, we

John Story 45:11
we have coping mechanisms. We tell each other we love each other every day. Our Jack keeps us on on his toes, and he still makes us laugh every day. And I think our jack is going to turn into a fine young man.

Scott Benner 45:27
I think even if Lila had survived,

John Story 45:30
I know she'd have been an advocate for the T 1d community, she'd have been on the campaign trail with me when she got old enough. And one thing I must say, Scott is somebody said to me, when I was going on Facebook and saying, Look, I'm starting this campaign called Lila's law, someone said, You know what, John, you need to think about a spot to do. You need to go on tick tock. And I'm like, I'm 44 I'm 44 years old. I I can't be I can't be dicking about in videos and things like that. No, but that's where you seem to get attention now and traction. So I went on to tick tock in the end of bite the bullet, and I'll do it. And one thing I've realized since joining tick tock is what an amazing community. The T 1d community is the such, you know, and I'm

Scott Benner 46:22
proud to advocate for them, yeah, you know. And they're so supportive.

John Story 46:28
They're keeping me going, too. When I went to Parliament in August, I remember putting a tick tock up, and I was outside Big Ben, and all I remember seeing was people was asking me, Are you scared that you're going into parliament to talk to government officials? And I just said, No, I'm not at all. At the end of the day, I'm stood here standing on the shoulders of 400,000 C 1d giants, with Lila holding my hand, watching over us.

Scott Benner 46:58
And I will continue.

John Story 47:00
Sorry, I will continue to fight for the T 1d community in the United Kingdom and worldwide, if need be, because we also believe that there needs to be early detection programs going in place. There's a clinical study going on at the moment called the Elsa study. And I will mention this man's name, he's a wonderful man. His name's path Narendra. He's a researcher. Is a professor in diabetes, and he runs something called the Elsa study, which is basically, it's early detection surveillance for autoimmune conditions. And he I've met with path a couple of times. He's a lovely, lovely man, but unfortunately, this is the 20,000 children in the United Kingdom have signed up for it. But as path, quite rightly, points out, unfortunately, it's just a clinical study that's a voluntary program, and it's generally aimed at those that are, let's say, more susceptible or at risk to type one, and that program is for three to 13 year olds.

Scott Benner 48:06
Lila was two. Yeah, she

John Story 48:08
wouldn't have been eligible for that Elsa study program. Obviously, after Lila's passing, we signed jack up for the program,

Scott Benner 48:16
and Jack doesn't have any antibodies.

John Story 48:21
But what's also important to know is we think that it's a great, great initiative. We think that the program should go national, because if we're finding antibodies in the system, but they're not yet living with type one, it can be put onto data systems with doctors, and when they go and when they go in to see their doctor, they know that they're at risk. Yeah, and it also, it also gives families the opportunity the preparation and planning for when the event will happen, that that child will develop type one, they're in a better place to deal with it.

Scott Benner 48:57
Yeah, John, this morning, I actually interviewed a doctor about early detection and screening and trying to draw more attention to it. It's a difficult path to get people to be aware of and even to get doctors to agree to, if you were to come to them and say, Hey, I need to be screened for something, for them to say, Yeah, that makes sense. Let's do that. You know, there's a lot of education that needs to happen. Exactly You said you've met a lot of people who've kids got in your daughter's situation, but were maybe saved at the last second by something. But have you heard from other people who've lost their children? And is there a way to, I don't know, gang up, you know, get together? Like, is there, you know what I mean? Like, I mean, instead of everybody off in a certain direction, trying to do a thing. What if you guys united? Would it make it more powerful? Do you think it would help bring more attention?

John Story 49:48
Indeed, I've been speaking to a lady from Wales. She lost her son a few weeks after his 13th birthday. I won't mention her name because I don't think, but what I will say is she is an absolutely. Wonderful, wonderful woman. She's a fantastic advocate. She's the work she's done in Wales has been magnificent. She's actually won a proud of Britain award as well. She knows who she is, and if we've got any Brits listening, everyone will know I'm talking about now, but, but, yeah, I've spoke to her. She said that apparently, med schools in the UK, now I don't know how true this is, they get around 15 minutes on the subject to type one. Yeah, that's about right. So when I spoke recently to one of my local MPs, she's going to get me in touch with our local holy York med school, she's going to try and get me to stand in lectures and talk about Lila. And if we can put without your respect, if we can put the fear of God in people whilst they're still in med school, maybe that will make them understand the importance of testing for diabetes. Very, very critical.

Scott Benner 51:01
You know, that moment comes up, it occurs to them that this is one of the things they should be wondering about.

John Story 51:07
And I mean, at the moment, I'm doing trying to raise as many funds as possible for break through, T, 1d I've raised 11,000 pounds. That's about $15,000 in just over two months since line is passing. We did a Family Fun Day, and it was, it was, it was absolutely packed, incredibly proud. I've been sending emails out to all the GP surgeries in the United Kingdom. That's going to be a long and arduous process, but I'm currently at just over 4000 emails sent, but that's across GP, surgeries, primary care networks, integrated care boards, diabetes specialist, nurse, nurses, and of them, 4000 emails. I've received 42 responses so far, okay, but I've done 42 responses. They have all been positive. You know that because I've been saying in this email, do you have blood glucose monitoring kits? Do you have dip test for urine, for ketones, and are you displaying for teas posters within your surgery? And when those that have been emailing me back said we didn't have them posters, but now we're putting them up in the reception area, or we're putting them in our digital boards and all sorts. So if Lila's legacy can save just one life.

Scott Benner 52:21
I'm sure it will. John. She's doing all right.

John Story 52:25
I mean, to be honest with you, I was very I was running on fumes for quite a while, but Lila is giving me the strength to keep going every time I feel like I'm going to lose it. You know, when I'm speaking to somebody of importance, I can feel her touching my hand and saying, Come on, daddy, you can get through this. So I know she's with us, even though she's even though she's not here in body. I know she's with us in spirit. And I mean, and you can still fight for

Scott Benner 52:55
Indeed, indeed, you know. And she's,

John Story 53:00
yeah, let's leave a lasting legacy for Ray. You know, it's and I'm doing some doing something stupid in the next couple of weeks as well. I'm going to be basically, I've been a keyboard warrior for the last three or four months, emailing every man and the dog. But Consequently, I put about a few stone on in weight, or kilo, kilos or pounds, whatever you want

Scott Benner 53:22
to call it. Need to get out and get moving a little bit.

John Story 53:25
Yeah, yeah. So I'm going to do a 10 mile walk in Hull. We're we're mad about our rugby league. So I'm going to walk from the stadium of the club that I support, of sea to the arch rivals whole Kingston rover. So I'm walking from the west of the city to the east of the city and back again, and that's about 10 miles. So I need to get because Walking is one of my passions, but I haven't been doing much of it lately, but I need to, I need to shift some timber.

Scott Benner 53:53
Well, I just looked while you were talking, and today, the This podcast is ranked number 48 in the UK for meta in the medicine category. So hopefully people will hear it and share it with maybe their physicians offices you know people they know anyway at all, to help get your message around and and make sure that people you know remember the 4t and and remember that you know this could just because it doesn't happen to everybody doesn't mean it can't happen to somebody, and it's worth knowing about and fighting, fighting for and making sure that people are aware. I'm so sorry. I have to admit that it took me a while to pull myself back together when you told me about how you opened her bedroom door in the morning and say good morning. And I wasn't okay after that. I don't know how you were still talking, because I was trying to compose myself quietly off the microphone. Yeah, and I found a post online from July about your petition. I guess you had a petition going around. Maybe you still do, I'm not sure.

John Story 54:54
Yeah, it runs till December. It's currently at 21,250 we need to get to 100 Right?

Scott Benner 55:00
And those people need to be imagining like citizens of the UK can't be just from anywhere, right?

John Story 55:05
Yeah, as long as long as you're a UK citizen, you've got a UK passport, you can sign the petition. The trouble is, with petitions is generally at 10,000 signatures, the UK government responds online, and it's usually, don't matter what the position is to generally fob it off. They currently believe that there's insufficient evidence supporting routine testing for pediatric T 1d and it has no plans to introduce it. Well, let me tell you this UK Government, and I hope you're listening. One in 250 children are diagnosed with it, right? One in 100 across all age groups in the UK. So nearly 40% 100,000 are diagnosed at the aka stage, and our daughter is buried in a cemetery among adults because she's two, she was too tall to be put in a baby part. So, you know, yeah, we need to get to 100,000 to get it debated properly in Parliament. Now, I know you can get things legislated without the need for a petition, but we've put to get 100,000 signatures across the line would really, really drive the issue further. There's been, I don't know if you know Scott, but there's been a bit of a scandal in the UK as well. Lately, 55,000 people recently have been misdiagnosed with type two diabetes. They've actually been misdiagnosed with the condition because the test because the testing systems were incorrect. Oh my gosh. I didn't know about that. That's just recently hit the national news.

Scott Benner 56:34
I was going to tell you that I think it's very impressive. There's 21,000 people signed this petition. Is no small feat to get that many people to look at something and take a moment to complete it like this.

John Story 56:45
It is, it is. But then you get somebody like coming online every now and again, saying, call an immediate general election. And next thing you know, you got 3 million signatures within five minutes. And you're like, come on, they're not going to call it, are they? You know, at least if you're going to put a petition on make it meaningful, we are on page one of the petitions, which is which is a feat in itself. It's like going back to when I was been speaking with the T 1d community. I just don't think their voices are heard. I don't think they understand what living with the condition means that that misconception of, should you be eating that cream cake? All that kind of thing, you know, you can't eat sugar, you know. Well, what am I supposed to eat?

Scott Benner 57:27
Tires? Tires? Yeah, hard to make it for people to really understand something like this that they don't live with already, and it's so much time and effort to get somebody to be educated. That's why I said, I think it's fascinating and marvelous that you got 21,000 I can't believe somebody won't look at it for 21,000 signatures, 100 1000s, an insane number for something like this. You know, for, I mean, type one diabetes. This obviously impacts a lot of people, but it's still a very small fraction of the number of people walking the planet. Yeah, yeah. 21,000 is pretty like, in this case, said you're on a pretty small island, you know, I mean, how many people in the UK even have type one

John Story 58:07
the last estimated 400,000 we've got the fourth highest rate of type one diabetes in Europe. And the UK government think that we haven't got a problem

Scott Benner 58:16
here. Yeah, but 400 My point is, is that, like 21,000 is what percent 400,000 it's it's a big number, yeah, yeah. I mean, you're representing 400,000 people. If that's the number, 21,000 is a big chunk of them. It's over 5% of the people have type one. That's to say that you need 100,000 signatures. One in every four people with type one would need to sign your petition. How the hell you suppose even meet those people, let alone

John Story 58:48
Exactly? But what you need to remember, Scott as well, is it's kind of like it's not about just people with type one sign. And everybody in the UK should be signing this. Yeah, they don't know. In my opinion, you

Scott Benner 58:59
have a you have a level of perspective that most people don't have?

John Story 59:03
Yeah? Well, I say that. I say that from a bias perspective and an emotional perspective. But the reason I say that, like, even if you haven't got type one sign it, because people regard it as a rare condition, yeah, but it's only rare until it happens to you. You know, that's for certain type one diabetes does not discriminate. It doesn't care if you're black, white, pink, yellow or brown. It doesn't matter if you're one years old. It doesn't matter if you're 100 years old. If it wants you, it'll get you. And going back to the antibody testing thing as well, you can go through life without any antibodies whatsoever, but you'll just get one virus that attacks your pancreas and all of a sudden you've got it. There's various ways in which you can get type one. And I think it's critical for people to realize that it's not an I'm all right, Jack thing, yeah, at the end of the day, this, this, this petition. It's not just for me personally and our family personally. It's very much centered around the loss of our. Beautiful two year old little girl. But it's also to advocate for change and make sure that no child ever goes through what lion has been through again. And the sooner people realize that, sooner they'll start signing this petition.

Scott Benner 1:00:14
I hope so, John, let me ask you a couple of other questions. I imagine looking down you have a good feeling for your lineage and your wife. So are there other autoimmune issues in the family? Are we talking about celiac or hypothyroidism? Do people have you know, any other autoimmune issues that you know of in the family? Ra, for example,

John Story 1:00:35
right within our family, Emma's got lupus, okay, but lupus doesn't guarantee so basically, when, when Lila was born, she was tested for lupus, came back negative. I was born with cerebral palsy, okay, or cerebral palsy, but again, you can't get cerebral palsy. About proxy that's caused by a lack of oxygen to the brain, right? I was born with placenta previa. People used to think I used to say, when you score on dates with women, I said, Look, I've got something to reveal to you. I've got cerebral palsy, which affects my right arm and my right leg. But don't worry, if I kiss you, you won't catch it.

Scott Benner 1:01:16
No, please. I mean, but what about like Crohn's Colitis, nope, anemia. What I'm trying to think Addison's graves, like, anything like that, like aunts, uncles farther apart, like down the line, nope, no. So Lila was brought in you, you'll never know because she wasn't screened, right? But if maybe she had antibodies, and then, like you said, the virus came and listen, my daughter had a virus right before her diagnosis as well. Yeah. And, I mean, it's fairly, I think, commonly understood that this can be the pathway you have some sort of a virus. Your immune system, you know, gets a little half cocked and ends up, you know, attacking beta cells instead of the virus, vice versa, yeah, like, that kind of problem. You know, it's not uncommon. Obviously, it's also not a thing you would have known. We would we didn't know to think that people are going to be screened at birth for that stuff is, you know, if they, if anybody gets that accomplished, we're not. We're nowhere near that yet that's, you're a decade away of people maybe even making inroads and getting somebody to consider type one, something that we'd screen for, those auto antibodies.

John Story 1:02:23
Well, you're right. You're right. Scott, you're right. What doctors need to be thinking as well is, regardless of whether somebody's got antibodies or not, if your child at such a tender age goes in with any sort of virus, like your tonsillitis, the doctor needs to be thinking, what's the root cause,

Scott Benner 1:02:41
and maybe that should escalate their thinking, right? Like, hey, you've experienced the virus. Maybe that makes you more susceptible now to a diagnosis of something else. What are those things we could be looking for? Type one being one of them, exactly, exactly. Boy John, I want to wish you a ton of success at getting that into people's consciousness. And I hope this is helping you do that. You know, if you'd like to send me over any kind of post that would point to literature you have online, to the petition, to all those things, you know, I'd be happy to put it up for you online as well. Do you have a website that we could direct people to?

John Story 1:03:19
No, I don't have a website, but what I will do Facebook page? Yeah, I've got a Facebook page. What I'll do is I'll send you an email. Scott, within my signature, it says follow me on my socials, and it has some Facebook, my Tick, tock, and my Twitter, tweet, X, X, whatever you want to call it now, so you'll be able to find me through there. Yeah, I'll send you an email immediately after the podcast, yeah, and

Scott Benner 1:03:42
I'll put it all out there for you, and hopefully it'll, it'll reach people that can be helpful. I mean, I want to say again, I know we don't know each other, but I certainly hope that you and your family can find a way to, I mean, find some sort of peaceful moments here and again and to build forward for the three of you. I can't imagine, honestly, what you're going through. I don't know how to I don't even know how to be comforting. Honestly, I don't, I don't even know if I could be but I hope you guys find a way to find some peace and some quiet. And I don't know what that is. I'd love to be able to give you advice, but I don't know what it is, but I hope you keep looking for it and and that you and your wife can find it for you know, for you guys and for Jack,

John Story 1:04:29
thank you, Scott, that we really appreciate that. And you know, love to you and your family, love to America, love to the UK, and thanks for having me.

Scott Benner 1:04:40
No, it's my pleasure if you, if you have any updates ever, please, please don't hesitate to reach out.

John Story 1:04:45
Yeah, brilliant. Remember the hashtag Lila's law?

Scott Benner 1:04:49
Okay? Yeah, thank you everybody. Um, John, hold on one second from we're gonna stop, but I'm gonna keep talking to you for a second. Okay, okay, all right. Thank you. You.

Having an easy to use and accurate blood glucose meter is just one click away. Contour next.com/juicebox That's right. Today's episode is sponsored by the contour next gen blood glucose meter. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox, you.

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More