#1964 Undiabetic
Undiabetic
Katie Beth Hand had an islet cell transplant in January. She has been off insulin since March 3 with an A1c of 4.9. Six months later, she returns to describe what it actually feels like.
Jump to a moment
- She is six months off insulin. Katie Beth had her islet cell transplant on January 13. They pulled her off basal a week later, she came completely off insulin on March 3, and at the time of this recording she was at roughly day 168 with none — tracked by a countdown timer on her phone. Her A1c is 4.9. She first told this story in episode 1787.
- The first months had their own learning curve. Post-transplant protocol meant low carb — no more than about 30 to 35 grams a meal — plus a few units of supplemental insulin before eating, to give the transplanted cells time to graft and establish blood supply. She describes the strange new problem of mistiming a pre-bolus: her new islets would catch the spike, then the injected insulin would arrive and send her low. Learning to be undiabetic, as she puts it, took some learning.
- Her body got there before her brain did. Months after stopping, she was still opening a Dexcom app that wasn't there and packing insulin for trips she didn't need it on. She had to move the app on her phone to break the habit. She still has a fridge full of insulin she's been donating to people she knows. Now there are stretches of days where blood sugar doesn't cross her mind.
- On the drug keeping it working. She flies to Chicago every 21 days for extensive bloodwork and an infusion of tegoprubart — an alternative to tacrolimus being trialed to protect the transplanted cells. Her report: no side effects at all, and the longest patient in the trial has been off insulin just over two years. This is one participant's experience in an ongoing trial, not an approved therapy and not medical advice.
- She has become the person who describes what it feels like. Researchers handle the science; her contribution is the texture — what it was like to take off a Dexcom for the last time, to throw away an insulin pen, to spend a whole summer at lakes and rivers with her kids without thinking about a site falling off. She's clear-eyed about the reactions too: genuine excitement, weary skepticism, and the people for whom it simply hurts too much to hope. Her advice to all of them is the same — take care of yourself now, so you're healthy enough when your version arrives.
- Katie Beth's first episode: #1787 — Cured? Patient Nine Speaks — her original conversation with Scott.
- Katie Beth Hand — Calamity Katie Beth — She posts as Katie Beth Hand / Calamity Katie Beth on TikTok, Instagram and Facebook, and has started a YouTube playlist following the journey from the beginning.
- 504 plan builder — The free school-plan tool Scott describes building in this episode.
- Diabetes Pro Tip series — Episodes 1000-1025 — for taking care of things while the research continues.
Every word of the conversation
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My name is Katie Beth Hand, and I am patient nine in the Eladon trial, which is a trial trying to create a functional cure for type one diabetes. I had an islet transplant back in January 2026 and then have been going through the process since then of becoming undiabetic. So I'm excited to be back with you and give you an update on everything that has happened since, I believe, February is when we last spoke.
Is undiabetic gonna be a word?
I don't know. I'm still figuring it out, to be honest with you.
I can't wait. Yeah. You were on episode seventeen eighty seven. It's called Cured? Question mark.
Patient nine speaks. And There you go. Yeah. And then my dopey butt, like, I think I made artwork from, like, an old animated movie for it because of number nine. I'm sure no one knew what it meant but me, but that's fine.
We we did talk about the number nine movie on the podcast. Yes. So it paid attention. It was relevant. Yeah.
Well, I followed through. I was like, oh, this is great. Also, I don't even remember the is the movie just called nine? I'm I don't wanna get back into it. It's a fun little animated movie.
So we spoke in February of this year or last year?
No. It feels like last year, Scott. It was this year. We spoke in of this year. Yeah.
Let me do the math. March, April, May, June, July, August. That was six months ago. Yeah. Alright.
Well, somebody makes too much podcast content. Anyway, 1780 holy god. I think I went to the nineteen hundreds now. 1787. At that time, how far removed were you from somebody saying to you, hey.
I think this worked. Not even, like, you can stop using your insulin.
Yeah. So at that point, I was feeling pretty confident that it had worked because I had my transplant in January on January 13. And then a week later, they pulled me off basal insulin. So I was already seeing it starting to work. And by February, when we spoke, I was eating lower carb, which is your protocol for the first couple of months post transplant.
Undiabetic4:26
So I was eating lower carb, no more than, like, thirty, thirty five carbs per meal, and and was still just, like, using supplemental insulin, like, two or three units every time I ate. Yeah. And so yeah. But I could I could already tell by then that it was working. And, of course, I'd had c peptide tests, and and the the fun part is I'm a kind of a science nerd when it comes to this.
And so I love like, I live inside of my MyChart, and we I get all these tests run every time I go to Chicago. And so I dig through and look at, you know, c peptide and what is that and all these different functions and kidney function. And, so I could tell by the time that we talked that it was working, but it's interesting because I was still you stay on supplemental insulin for a couple of months post transplant while your islet cells gear up and establish blood flow. And so I was when we spoke last, I was still on supplemental insulin. I was not even off insulin, but I ended up coming completely off insulin on March 3.
And then and that was a fun phone call. So I came off March all insulin on March 3, and then I've had nothing since. And so it's today is, like, day one hundred and sixty eight, I think, without insulin.
Wow. You you you might never stop counting those days.
Yeah. I have a I have a little thing on my phone, a countdown timer that that counts it for me every day.
Yeah. No kidding. So the, supplemental at the beginning is just to not drop the load right on those new beta cells right away.
Right. Yeah. It's to give them a chance to really get into your liver and establish good blood supply and give them time to graft
Mhmm.
Before you just start eating normally. And so you eat lower carb for the first couple of months post transplant. That was the hardest part. And then, you know, you take two or three units of insulin every time before you eat, like a pre bolus. And you have to get really good at pre bolusing because your islet cells are still in there and still they function.
And so a couple of times what I did is I would not pre bolus early enough, and I would eat and my blood sugar would spike. So my islets would catch it, and my islets would fix it. And then my insulin would kick in, and it would end up sending me low. Oh. So it was a very it was a steep learning curve, and we'll use that word undiabetic again.
Learning to be undiabetic also had a bit of a learning curve to
it. That's interesting. Yeah. So it was almost like well, it was like injecting a person who didn't need the insulin.
Right. Yeah.
What what what was hard about the low carb? Were you just was there a day where you're like, oh my god. I I can't eat another chicken wing or how the
Yeah. I'm not a low carb person. To some degree, yes. And I've you know, because I've been diabetic so long, I naturally mix, like, my carbs with protein and things like that. I'm just I'm not a huge I'm not a big meat eater.
Like, I'll eat the odd occasional hamburger. I like grilled chicken, but I'm not a person who loves to eat super low carb stuff. And so just doing that and and here's the other piece. So you met doctor Wachowski. You had him on a podcast not too long after you and I talked.
“I think this worked”7:29
Yeah.
So realize that during this whole time, doctor Wachowski and the research team has my Dexcom on their phones. So, like, when I would eat more carbs than I'm supposed to or, you know, not pre bolus well or whatever, he would pick up the phone and call me. And so, you know, every three months when you go or your daughter goes to the endo and they're like, what did you eat three weeks ago that made your blood sugar do that? It's that, but it's every day. There is a whole team of doctors staring at my my Dexcom where there was.
So it was a high pressure environment to live in for a couple of months there.
With and they were just gathering data. They weren't it wasn't like they were slapping you on the road.
It was really it not even about necessarily gathering data. Doctor Wieckowski watches all of his patients. Whether you're, a kidney or a pancreas transplant or an islet cell transplant, numbers change day by day post transplant with you coming off of insulin. So he watches that like a hawk to make sure that you're not having any lows that are dangerous or any highs that are dangerous. Like, there was one time I got a compression low on my Dexcom.
I had it on my stomach, and I got a compression low in the night. It was, at midnight, and it showed that my blood sugar was, like, in the forties. But I knew that it wasn't. So I got up and I checked, and my blood sugar was, like, 92. And my phone rang, and he was like, hey.
Is this real? Are you actually in the forties? And I said, oh, no, sir. Was depression low. I just, you know, I I just checked.
I'm at 92. And he was like, okay. Good. Goodbye. And then hung up.
So, like, that's how closely he watches everyone just making sure that we're not overdosing on insulin and that our numbers are staying really good and steady.
Why you stay on insulin at first9:08
I his dedication struck me when I was speaking to him.
Yeah.
Yeah. Yeah. Just to genuinely, seem like a really well intended, focused person. Did you listen to him on the podcast? Diabetes, as you know, comes with a lot of things to remember.
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A research team watching her Dexcom11:35
I did. Yeah. I did listen to him on the podcast.
Did you feel like that was a good representation of him?
Yes. Yeah. Mhmm. Yeah. So he first of all, he's one of the most brilliant people you'll ever meet, so there's that.
He was very to to me, he's extremely intimidating. He was when I first became part of the program and got to know him. He's, like, six five. He's, like, huge, like, a bear. Mhmm.
And he talks really fast, and he's really intelligent. And so to me, like, every time he would come in and do my visits, I was, like, panicked that I was gonna, like, say or do the wrong thing or get kicked out of the program. And what you learn about him as you go through and get to know him better is, like, he's genuinely one of the nicest people on the planet. He genuinely wants to help type one patients, and he really is, like, trying to to move the ball down the field towards a cure and really excited about his work. Yeah.
And so the funny part is he's actually he's a very reluctant hero, so it's funny that he did the podcast with you. We kinda have to push him to do any sort of social media. Usually, he just wants to be left alone to do science and take care of his patients, and and that's it. But we live in a social media world, and so he's been getting out there more. And, you know, he probably stares off into the distance and dreams about the days before he had me as a patient when he lived a peaceful life.
And now he's he's all over all over the Internet and and getting tons of phone calls and requests and stuff like that. And he's he's genuinely a nice guy, and he loves his patients and takes such good care of us.
I felt like well, a few things. I felt like I got to his personality at some point in the second half. Like, I felt him lighten up, I thought, like or be less guarded or something. Yeah. But I I forget her.
I'm I'm sorry to say I forget her name, but the person who kinda does this correspondence for for him, she must have canceled that interview seven times in a year. Like, I I before I knew who you are, I was trying to get him. And I and I just it was not going well. He'd be on the books, then it would be like, he has a procedure. He has to go.
He has like, he we moved something in, like, this he's doing a surgery. He's it was always like something. And at one point, I thought, like, this is starting to feel like, you know, we didn't have a good
first Intentional.
Yeah. We didn't
ever look me.
We didn't have a good first date, and he don't wanna let me down. It's but but then there he was one day. And when he when he logged on, I thought, oh my gosh. We made it work. And it's funny because I took I I I took crap online for not having it on, and I'm like, I'm trying.
Like, you know, it's not that easy. He seems busy is what I'm getting at.
So he is. So a couple of things to know about him. Yeah. So number one. So, yes, he runs the Eladon trial.
So, you know, there's 12 of us. We're about to add three more to phase one. They've started the kidney version of the trial, so phase two of the trial. And then on top of that, he also runs the Vertex trial out of UChicago as well. So he's got the Elodon patients.
He's got all of the Vertex patients, which is the islet the lab grown islets coming out of Vertex pharm Vertex Pharmaceuticals. So he's got all of those patients, and then he's still a transplant surgeon. Mhmm. So I have to remind myself of that because sometimes I'll, you know, call or text and be like, OMG. I got invited to meet Nick Jonas.
And I'm like, why are you not calling me back? And he's literally, like, in the middle of a kidney transplantation. And so
I'm a busy person. You're bothering me.
Out, like, genuinely saving lives. And I'm like, don't you wanna hear about my, you know, podcast?
And so I had a reel get 20,000 views. Yes.
Yeah. It was great. Yeah. And so he, like, truly and he's a doctor. He he lives at the hospital.
He does transplants. And the crazy part he talked about this with you on the podcast too, but the crazy part too about transplantation, really that field in any type of transplantation is there is no set schedule. So you can set a meeting, and then if that's when kidneys end up being available or if that's when there's a pancreas that's available, you know, then whatever it is you have planned, whether it's work life or personal life or interviews, it just gets canceled. And the whole team lives their life like that. Like, the amount of weekends his research team has spent canceling plans and sitting inside a windowless lab isolating islets is astronomical.
So it really is a dedication to the the cause.
Yeah. I was glad to get that part from him. I I really was. So okay. He obviously is out there doing, you know, what he's doing, and he's great at it.
Did you having knowing him better than I know him, did I knock him off kilter when I asked him what his succession plan was? Because it panicked me while he was talking. I thought I was getting the vibe you gave me just now. It's a really bright guy. He's at the center of this whole thing.
Who's he passing this to one day? And and I felt bad after I asked him because I felt like I said to him, well, you're kinda old. Are you which he's not. But you know what I mean? Like, I I felt like I put him in that position, but I did think it was a good question.
But did you did that clock for you when you were listening?
No. Well, you know, I don't think it was a question that he expected, but it's also something that I do think he's thought through. I just think he wasn't maybe expecting the the question that day. And, you know, he's, what, 58 now. And so, but, you know, the the key and he had a good answer, which is basically, you know, he's doing the work and reporting and recording everything so that because I wondered that too, Scott, as a patient.
You know, I love doctor Rakowski and and the research team, and the man flies all the time. And so I'm like, you know, what happens if something tragic like, what happens to all of us? Who inherits us?
Yeah.
Is there a medical clinical trial version of an estate plan where we get passed off to someone else? And so it was a question worth asking. And, you know, it's something that's happened before with other physicians, and there is kind of a a succession plan in place. But, yeah, it's an it was an interesting question.
Thank you. I I'm just gonna take that as I asked a good question. We're gonna
move on. A good question. Thank you. Yeah. And it's hard to throw him off kilter.
So there's that.
He was awesome. I I found myself thinking, I hope he comes on again at the same time. I thought I don't have the energy to try to get him back on again.
So The truth.
So so tell me, since so since we spoke and and all that was happening for you, and then you said March, they took you off insulin completely. Right? Mhmm. Yeah. Then what's I mean, is there anything to do besides fly out there, get your infusion, do your tests, come back, and be undiabetic?
Or what what do you what's I mean, what's to report, I guess?
Yeah. So, I mean, life life is very different now, than it was even when you and I spoke post transplant. So I did come completely off insulin. That was on March 3. He actually and it was funny listening to your podcast because he on the podcast that doctor Rakowski did with you, he talked about how used to they would, like, come in and do a big deal when they took a patient off insulin.
And then they had a patient early on that, like, got so excited. She, like, fell going down the stairs and broke her arm and had to have surgery.
Mhmm.
So after that, the team would just, like, call and take you off insulin. So he actually called me. I was at Chicago O'Hare catching like, getting on my flight to fly back to Little Rock. And he called, and he was like, okay. Your a one c is 4Point9.
Let's stop taking insulin, and I'm watching, and let's just just live and then just see what happens. Don't take your Dexcom off, but stop insulin. Let's see let's see what happens. So I get that phone call. I'm panicked.
I'm like like, in a good way. And it's the type of news that, like, you feel like you should shout from the rooftops that I'm amongst complete strangers getting on a plane. And it's not something like with cancer where you can be like, I just got the call. I'm cancer free, and everybody gets it and they celebrate. Like, you can't explain islet cell transplantation being taken off.
Yeah.
So, so that was interesting. That was March 3. And then
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What happened after that really kind of the next big thing, a couple of visits to Chicago later, they told me, you know, that I don't I just don't have highs or lows anymore. And so they they told me to take off my Dexcom. That was kind of the next big piece for me of becoming a diabetic is just to be device free. And I was actually super hesitant to let my Dexcom go. It's kept me alive for thirteen years, and it's just that data input is just something I look at a 100 times a day.
So I kept my Dexcom on for a while and then finally pulled it off, and I've not I don't I don't I'm device free full full time. So my brain's really quiet. I never think about my blood sugar, or I count a carb or worry about going low while I'm out living my life. So what that did is freed up just a ton of brain space. If you live with type one or you manage someone's type one, you know how much you're just it's just a huge part of of your life.
You calculate you run math and calculations, and, you know, what are we doing next, and how many carbs is in this, and, you know, it's it's constant. And so all of a sudden, I had none of that. None. And I didn't know what to do with a brain that's so quiet. I had all this energy.
I'm sleeping through the night. I feel really good. I have nothing on my brain. So that ended up turning into, okay. Well, what's the next thing that I can do to push the ball down the field further and make this something possible for other people?
Okay. So that's where kind of, I guess, my advocacy for islet reclassification and fundraising and all of that has come into play. So, actually, even though I don't have diabetes anymore, I talk about it more than I ever did when I did have it because I travel around and do fundraisers and educational videos and talk to doctors and nursing groups. And that's that's what I do with all of my free brain space now.
Are you doing that just on your own? Are you has somebody hired you to be part of something? Is it
No. Hopefully, someone will come along and hire me to do that. That'll be so much I would love to do that full time. I still work my full time job, and then we've got you know, I've got the husband and four kids. And so I do get to work from home, which is nice.
So usually, what I do when I get invited to speak at an event or meet with the group or anything like that, I try to just work it around my work schedule where I can work and still do all my work meetings and still do whatever event it is. So right now, I'm doing I'm just doing both. So I'm traveling kind of all over the place and getting to meet a lot of really, really cool people. And, you know, it's it's a different kind of tired than being being diabetic has is one form of tired. It's like a grinding tired.
Now I'm, like, tired, but, like, a really good falls asleep feeling like we've made progress tired.
So I I have the I have the same experience from the the losing weight on the GLP. Like like, I, yeah, I have, like, all day long, like, it feel I don't know how to explain it exactly, but I'm more alert and I have more energy. And when I when I'm tired, it's I feel like it's because I lived a a full day. Is that what you're explaining?
Yes. That's the perfect way to describe it.
Yeah. Okay. What is the reception you're getting when you're going out and talking to people? Because let me say this. When you relayed that you were in the airport and he called and said your a one c's what did say?
4.9? Mhmm. When you said 4.9, I cried.
Yeah.
And I don't know you. And I and I imagine everyone listening had the same, like, feeling. And then you're and then immediately, you start stacking up. Oh, there's a world where this is happening, but my kid's up the hall and it's not happening for her. And and I can't you can't delve into that because it'll make you crazy.
Right? So
Right.
Yeah. So it's just I don't know. It's a strange situation. Like, I used to tell people more than I do now, but one of my favorite kind of thought exercises is to, like, think to the end of my understanding of something and then just sit quietly and wonder what's on the other side of it. And you make things up or nothing comes to you or whatever trying to imagine what's gonna come in the future, etcetera.
But what you're telling me is is that I thought to the end of my understanding, where in this case, my ability to touch something. And then you showed me on the other side of the glass something and said, look. There's the next thing. You can't touch it. It's not yours.
And no one's gonna give it to you, it's not gonna come out of that glass box. So, like, I I went through all that while you were discussing how you felt. And I'm wondering I'm wondering what's happening to people when you're going out in public and having these conversations.
Yeah. So it's both. And, you know, the Internet, as you well know, you're going to get a multitude of of reactions across the board. And I'll say this, all of them are very, very valid. So Mhmm.
They're I would say the majority of the reaction I get when I talk to people about my experience or, educate people on islet transplantation or on not just the Eladon trial, but a lot of I talk a lot now about a lot of the islet transplantation trials just sort of across the board. There's so many cool ones happening right now. And so when I talk about these things, there are a lot of people that are, like, genuinely really excited, and they have a bunch of questions about it, and the feedback is really positive. And they feel very hopeful for the progress that's happening. And then on the flip side of that is the and equally valid feelings is that feeling there's, you know, the the other side, the skeptic, who which, by the way, I was for a long time too till it literally happened to me.
But the there's the skeptic who's like, whatever we've been hearing here in five years for the last fifty years. I'll believe it when I see it. Mhmm. And then there's this other group of people, this other camp of people that are like, I believe it's happening, but it hurts too much to really even dream about right now because it's still you know, it's my kid can't get it today. We still are looking at years of insulin injections between my kid and what you're talking about.
And so it hurts too much, but I'm excited. Let me know when it's available. And all of those things are really, really valid. So, you know, the thing I always try to leave people with is feel hopeful. It's it's really it's there's so much to be excited about.
None of it's coming tomorrow. Very much the best thing you can possibly do is take really, really good care of yourself as much as you can. Take good care of your try to manage the disease as much as you're able. And that way, when the cure in whatever version and I think really over the next five, ten, fifteen years, we'll see different versions of the quote, unquote cure coming out. But whenever it is that it's your time, you'll be healthy enough to have the procedure.
And so I hope that people hear my story. And and there are people that message me, and they're like, could you go eat a massive banana split with all of these different toppings and then just message me and tell me what it's like because I wanna live vicariously? So there's those people and the people who don't wanna hear about it at all, and and both of those are great. So I try to educate people. I try to put it in kind of a realistic frame.
The moment Scott cried28:21
And then, you know, doctor Rakowski, doctor Ricordi, all of these researchers out here doing the research, they do a really good job of getting information out and educating people. I think where my piece comes in is really talking more about what does it feel like. What was it like to take off a Dexcom for the last time? What was it like to throw my insulin, my insulin pen away? What does it feel like to go twenty four hours or longer and not do a calculation or think about blood sugar?
What does it feel like to spend my entire summer this summer outside at different lakes and rivers and swimming holes with my kids and never think about blood sugar or a device falling off? Yeah. So being able to walk people through kind of what you were talking about, the other side. You know, What happens when you actually do get to become undiabetic? What does that look like?
What does that feel like? What's the emotional impact of that? That's that's the part that I talk about. That's the part that I love to talk about.
Does it actually feel like something, or is it like everything else? Did you get used to it very quickly and you don't think about it anymore?
Excitement, skeptics, and “it hurts too much”29:31
It's I think about I think about it less and less. Like, I was thinking this morning as I was getting ready for the podcast. I was like, you know, now I have stretches, like, days at a time where I never really think about blood sugar. And for a long time, even after I came off insulin, there was just this built in knee jerk reaction. Like, I had to move my my Dexcom app on my phone because even months after I had stopped wearing a Dexcom out of habit, I would open my phone and click on my Dexcom to see what my blood sugar was.
Mhmm.
And then, of course, if you know Dexcom, then you you close your app, and then it beeps and alerts you that your app's closed. It was like this whole process. So there are all of these knee jerk reactions. I would pack for a trip and pack all my diabetes supplies even though I didn't use any of them. But there was just that piece of my brain that that still my body became undiabetic way before my brain allowed me to become undiabetic.
Yeah. But now there are times where I'll go a couple of days and really not even think about blood sugar. I really don't think about it when I eat. I never think about it when I exercise. And so that part just kind of, it feels very surreal that we've already I mean, I'm six months off insulin, and already I'm hitting that place where this not being diabetic is my new normal, and I didn't know that I would ever really feel that way.
Oh, jeez. I almost like body dysmorphia. Yes.
Very much so.
Interesting. Yeah. I'm not trying to relate you to me, but I've also had like, it's hard to shift quickly. Like, I've lost, like, 70 pounds, and I I I fundamentally look like a different person now. And there are there have been times I feel like I'm getting through it, but, like, there have been times where you're just like, that's either not me or I can't believe it's going to last.
There's, like, a real feeling of, like, my wife was like, I can't throw these clothes out. I'm a 100% gonna be fat again one day. And, like, you know, like like, that that and so you're packing your stuff going. Well, I'll my I will probably need my insulin on this trip. Like, because
Yeah. Just in case something goes through like, I still so I have a fridge full of insulin still still Yeah. Because I just first of all, it's so much money. I need to get with one of the organizations and donate it. I have donated some to some people in need that I actually know around here.
Nice.
But there's that part of my brain. And I think I think having type one really teaches you, like, you're always prepared for the other shoe to drop. Right?
Mhmm.
And then I have a stack of Dexcoms sitting underneath my bathroom cabinet that I just I don't I need to donate those. I have given a couple of those away, but I there's that part of me that's just like, it's that's been my life for so long that it's really hard to let that go even though I hate it. Like, I love life without insulin and life without DexComp, but it's really it's difficult. Yeah.
Why don't you just make a time capsule and keep one of each like a like a keepsake box and then give the rest away?
Yeah. Yeah. I need to do that. And I there are so many great organizations and and people that you know, that's another piece that I think we don't talk about enough is on the one hand, there's so many cool, like, trials and eyelid transplantation and all of this cool stuff that's happening. And then on the other hand, we still have so many people here in The States that are, like, fighting to get affordable insulin.
Yeah. And so, you know, there is this huge juxtaposition between where where we are and where all of us need to be. And so another part that I try to talk about, a lot is that realization that, like, you know, the science itself is step one. Islet reclassification is part of it. Then there's, like, scalability, and how do we make this available for everybody?
Does it feel like anything?33:18
And then I think the piece that really keeps me up at night, to be honest with you, is the fear of affordability. Because, you know, the the cure or functional cure in different forms, I'm confident is coming. The question the the thing that really scares me is what if it's the type of thing where it comes and, like, your average family of mom, dad, and and two diabetic kids, and and the parents can't afford it. So these are these are the thoughts that plagued my mind at night.
Well, I mean, yeah, look how much TZO would cost. Right?
Right. Yeah. So Incredible medication. We're kind of I've not officially, announced this anywhere, but our we do, autoantibody testing with we have four kids. We do that with them.
And at the their checkups this year, our two youngest boys, seven and 13, tested positive for an antibody. So, you know, there's that in the back of my mind constantly, that fear of you know, t zelda is certainly something we've talked about that that we would do. But, yeah, it's it's expensive, and it's a process in and of itself. So, yeah, it's it's a concern.
You just broke my heart. Wait. Wait. That's not even a thing I I considered. Oh god.
What do you Yeah.
Oh. What do you do when mom's cured and babies aren't? Yeah. That's it's an unusual position to be in.
Oh, I know. Well, first of all, may that never happen. But secondly, if it does, oh my what are you gonna say?
Yeah. You know, I've thought about this a lot. So the so the first here here's the interesting part. I talk to parents of newly diagnosed kids all the time. They message me on Instagram.
I'll jump on a Zoom call. People have me call their friends that I know in real life. You know?
Mhmm.
So one of the first things I always have to talk to parents about is, like, it's not your fault. You didn't cause this. There was nothing you could do. You know? And so the interesting part, I've had that conversation with probably 50 parents.
And then when my boys when the doctor's office called and my boys' test came back positive for one antibody, which, by the way, if you guys don't know about antibody testing, there's, like, four that they test for. And if you have one, it doesn't necessarily mean anything. Two or more can be significant, really raising your chances of getting type one. And then once you test for three or more, you know, that's when you would go on like a TZELD, which can delay onset. So when my when they called and my boys were positive so first of all, one plot twist to this, Scott, is that our children are a mix of biological and adopted.
So you would think it would be the two biological kids or the two adopted kids. It is one biological child and one adopted kid that shares no one.
My mind.
Okay. Yeah. And they both tested positive at the same time for the same antibody. So so the first thing I felt was, like, crippling guilt, to be honest with you, because my husband doesn't have type one. There's no history of autoimmune issues.
So there's this part of me, even though I've told a 100 moms this, where I'm like, it's not your fault, I really dealt with, like, really hard guilt. And and then I talked myself off that ledge, and my husband and I really thought and prayed about, like, well, what do we do? And the answer was we keep doing what we're already doing, which is we watch our kids. We're taking our boys to see an endocrinologist for further testing, and then we keep pushing towards a cure. Like, what else what else can we do in the meantime?
And so, you know, the cool part about the the blessing and all of it that my kids have that most kids don't is they actually would be kids, and god forbid, they do end up developing type one. But they would be kids, some of the few, who, like, actually watch the process happen on the other end of watching mom become undiabetic. And so it will it would or will be crushingly devastating if that happens.
Because they're gonna at some point, they would ask you why they can't do what you did.
Right.
Yeah. Yeah. And the answer could be because it's not even a thing yet. It's just a thing it's a thing that a handful of people did in, you know, in Chicago.
Yeah. That you that neither of you will even be old enough for old enough to apply for for ten more years. You know? So so there's that there's that piece of it as well. So when people ask where my energy comes from and where my passion comes from, it's from the incredible experience that I've had personally.
And then mentally, there's also this clock running in the background as well thinking, okay. We've we've gotta make this this happen. Lots of kids are waiting, and and my kids may end up among those as well. I hope not, but we'll see.
Yeah. Jeez. Life's a bitch. Okay. You you know what I wanted to ask you about?
Anybody did anybody has anybody directed anger at you over you having this thing that they don't have access to?
Yes. Yeah. And that's okay. You know, again, all all these feelings so type one's a really emotional disease. Like, it's it's devastating when you get it.
It's difficult to live with. And so I try not to take it super personally, but I for sure have had people who, you know, yes, but this will never happen for everyone else. Or, yes, but it'll be ten or fifteen years down the road. Or why would they pick you for this? You know, I I it should have been me.
I've had type one for fifty five years.
Mhmm.
And so just going through and kind of in a very kind way working through those questions one by one is is what I I try to do and explain to people, like, they you know, why did they pick me? I don't know. And I've talked about that a ton. They picked me because I met all of the medical criteria and because I applied. Like, there wasn't now there's a waiting list of a couple of thousand people for the Eladon trial.
I strolled in at spot number nine because it wasn't proven to have really been working then, and nobody else wanted to do it. And I and I, you know, took the risk, And luckily, blessedly, it worked out. There was nothing special about me, but that's, you know, that's how I got I I got in because I was a medical match, and I applied back in the day.
So They wouldn't they wouldn't be mad at you if you grew a duck out of the side of your head and still had diabetes.
Right. Yeah. Yeah. Yeah. If it if it hadn't have worked, nobody would be mad that that I was patient on.
But it's but that's valid. You know, there are people that have been living with this disease for a really, really, really, really long time. And so I hope that they feel hopeful and inspired by the science and progress. And, you know, when they feel bummed out about it, one of my first questions when I get those type of questions is, did you apply? I never win the lottery, Scott.
I've not won it once, but I also never buy a ticket. And so that does decrease my chances pretty significantly of winning that. And so I I feel like that's kind of the equation of you're not gonna get picked for a clinical trial if you don't apply for a clinical trial. So that would be that's that's step one, suggestion number one that I give people.
And you might you might apply for one and get accepted and it not have the outcome you're looking for. Or Right. Yeah.
And a lot of clinical trials I've met a ton of patients from clinical trials that kind of reach out to me. Some that are going really well, some that are not going well, and some trials that have been super, you know, across across the board unsuccessful. And so it really is it's easier now to look at, like, a Vertex or a Sana or an Elodon trial and say, oh, yes. That's something that wanna do because they they've been successful. The it's showing good progress.
But when you're in that first cohort, you don't know how that's gonna shake out. And there are more than you know, more trials than not end up not working, and that's okay. You know, there's still a lot that a lot of knowledge that comes out of those trials. And so I'm thankful for all of those people that were in trials leading up to mine because that's where the science came from. That's where the progress comes from.
I always think about the I I say this all the time, but this woman was on the show once. She was in the implantable pouch. I think it was Vertex Trial. And Yeah. She believed it was working, and then they removed the pouch because that was part Yes.
Because you and I talked about that, and I was like, man, I would I would be gone to a foreign country so quick. You'd never find me, man.
Yeah. I'd be gone. I'd be like, you see you. You're not getting this back. Yeah.
Adios. Hey. How's the, TEGA Pro BART been for you? How you
It's good.
Yeah?
Yeah. I would be afraid. Luckily, it's not like a blinded trial, or I would be afraid that I was in the, you know, the placebo group. I don't have any side effects from the Tego. I like, really none.
So I'm still doing the thing. I fly up every twenty one days. They do a ton of blood work and send that out to labs all over the country to be studied. Then I get my Tego infusion, and then I go eat something delicious in Chicago and then fly home for the day. So, still no side effects.
No I don't know. No. Everybody always wants to know, like, what about this? What about this? I've there's literally nothing.
I don't don't know. I don't have a headache. I haven't gotten a rash. I don't I don't know. I there's the TEGA is great.
You know?
Every twenty days?
21. 21. Every 21.
Okay. And to give people who maybe don't have context for it, that's the immune suppressant that's keeping your body from going and getting those beta cells that they stuck in your liver. Right?
Right. Yeah. So I had my islet transplant. They replaced my islet cells, put them into my liver and on my pancreas, and then they protect those islet cells with that's what we're we're trying. Instead of tacrolimus, which has some pretty nasty side effects, they're using this new medication, tegaprubart.
And the beautiful part of that is it does a better job of protecting those islets, and it it hasn't it doesn't give patients any side effects so far. You know, the longest patient has been off insulin just over two years, which is pretty awesome. There are people that have been on it longer that are part of a kid like, a full kidney transplant trial, and they're all still doing really well as well.
Hey. While we're talking about this part, let me just say to the company that makes that drug, I reached out to you. I did not hear back. I've seen you do some social media that four people have seen. If you'd like anyone to actually hear what you're saying, Scott@JuiceBoxPodcast.com.
So sorry. Sorry. Sorry,
Katie. No. That's great. Yeah. Yeah.
Yeah. I think that's I I think that's great. I saw this
one little real, and I was like, you could have yelled out a window and reached more people than this reached us.
Yeah. Yeah. It's it's so interesting. I think people think that either, like, I well, not everyone. But there are people that think that I work for Eladon, and, like, that's why I talk about it all the time.
I literally don't. I work for an estate planning law firm. And then, I like, I don't know anyone at Eladon. So, normally, I'd be like, listen, Scott. Super well connected.
I'll get you hooked up. I I don't I've never talked to a single person from Eladon.
No. No. I would imagine.
I if you're listening, love your work. Keep it up, guys. Thanks for all the care.
Oh, no. You're doing exactly you're doing exactly what I would do. I would by the way, for people who listen to podcasts, they won't be surprised by this. I would bump into the grocery store and go, hey. I used to have type one diabetes, but I don't anymore.
And then I'd start telling you about it. And then I'd probably walk 25 feet and tell somebody else. I don't know how long until that excitement would wear off. I mean Yeah. If you were my daughter, I this is probably all I would talk about.
So Yeah. Because it
is And which is what I do. That is you know, that's why I I do what I do because it's so crazy, and it's so exciting. And it's funny too because I'll post a video here or there about it. And, like, I literally had a lady comment yesterday, and she was like, this girl obviously doesn't know what she's talking about. Because if she knew anything about type one, she would know that you literally cannot live without insulin.
You would die. And I was like, welcome. Yes. And for ninety nine point nine nine nine percent of the population, you are correct. So that is a 100% true.
Let me put some context on what we're talking about here then. Yeah.
Yeah. Sounds like
question go ahead.
No. No. I was gonna say it sounds like she didn't read the whole post, but go ahead.
She didn't. Yeah. She didn't. And, again, you have to take every all your Internet comments with a grain of salt. Right?
But it was the the hardest question these days that I get asked is, do you have type one diabetes? And I'll give you context on that. So for years, we would meet diabetics in public because I always had my pump or my CGM on. And, like, my kids would see other people with a pump or CGM, and they'd be like, mom, Dexcom, mom, Omnipod, whatever. And then, of course, that person's like, oh, do you have diabetes?
Tegoprubart, and no side effects46:22
And you're like, yes. I do. And, you know, you meet these strangers in public, and you you get along immediately because you have this set of circumstances that are the same. So for years, that has happened. Well, now my kids have still been in the habit of being like, mom, Dexcom.
Hey, mom. And now when that person asks literally the most basic question, oh, do you have type one diabetes? I still have not figured out how to answer that. Because if I say yes, that's actually not true. But no is also it's like no with a huge caveat.
But when you're meeting somebody haphazardly at the airport or in line at the grocery store, I'm like, how far down the rabbit hole do I take this random stranger when they ask the most basic question? Oh, your kids recognize my Dexcom. Do you have type one diabetes? And I'm like, you can't just say no, but I used to and then stroll off. Like, can you imagine?
Yeah.
You'd think that I was absolutely nuts. And so yeah. So it's I still have not figured out how to answer that. I
yeah. I don't know. Because you're right. As soon as you start answering it in the affirmative that you don't have it, you're you're stuck with a third it's a thirty minute conversation you're about to have.
What the drug is actually doing47:36
And Minimum.
And they might not understand what you're saying, and then there's gonna be more explanation. And yeah. I mean, that that's a long road to go down. It it is very interesting to see some of the new doors and new confusions that you not having to take insulin anymore has has brought up and will continue to bring up. And I wonder too as you're talking, what's the day where you throw your hands up and go, you know what?
This is not my job. Like, I'm I because right now, you listen. I think everyone listening would trade places with you. I don't think that's, you know, disputable. And but now you have a new job.
Now you're the lady who spoke like, because everybody in the that in the trial hasn't been on social media to the to the extent you are. Right?
Right. Right.
And so
And a lot of people that are in the trial, like, the first 12 patients, they they don't really talk about it on social media at all. It's been kind of a private journey, which is totally fine.
A message for Eledon48:35
A 100%.
Yeah. And then there are a few people that have talked about their experience and do talk about it, not necessarily to the degree you know, as often as as I have and I do. I think that just comes down to personality.
Well, for sure. I would say
The Internet will get sick of me at some point, and then they can move on and and interview the next person.
Oh, listen. I'm still waiting for the Internet to get sick of me. But I'm point being, it could go on longer than you think. And at what point is it not like, is it is it tough on you? Like, you know what I mean?
Like, you listen. I'm happy for you. I'm personally thrilled for you. And and but at some point, you should be able to go back and live your life, not spend your life talking about this unless someone's gonna pay you to do it, then that makes more sense. I appreciate what you're doing, and I think it's incredibly valuable.
But at the same time, I don't know if it's completely fair to you.
Yeah. No. That's really that's that's fair to say. You know, right now, I'm in a place in life where I'm able to talk about it. It is a lot working full time and and having kids and, you know, the husband as well who appreciates time and attention.
“You can’t live without insulin”49:45
But it is something that I love to talk about. And right now, I feel like it's something where I can use I'm not good at a lot, Scott, but I am great at talking. And so I can use that talent to go out and hopefully make progress that will help other people down the road. And so I I really enjoy that piece of
it. Yeah.
The travel is a ton right now. Trying to work and travel is a lot. I mean, not all over the place. Houston, North Carolina, Indiana, obviously, Chicago and back every 21, New York and back, California. You know, I live at the at the airport, which everyone loves.
Right? Yeah. But listen. But
Let me jump in for a second. There's a great example. Right? Like, you got your life given back to you by and
now you been in the airport in the afternoon.
It's possible you gave back more of it than you got. Like like, being serious, like, know, like diabetes, of course, you know, you're thinking about things all the times, and I did not miss your point about the the openness in your mind and and extra space to think. But now you're now do you feel do you feel compelled to do this, or do you feel like it's a responsibility? Can you put words to it? Because it's a nice thing.
Because oh, I'll go on for one more second, Katie. I help a lot of I help a lot of people. Okay? Right. And there was a time in my life where I felt pressure about it such that it was overwhelming.
Because what I learned was that for some reason, I have a way of talking and a way of explaining a thing that leaves a lot of people here in in a in a place where they understand something they didn't understand before, and it translates to good health for them. And I don't know these people. I will likely never meet most of them. But once you know you can do it and the outcome is what it is, every minute you're not doing it can feel, like, wasteful or almost punitive. Like, I'm should be doing this right now, and I'm not.
Now I had to get over that or I would have burned myself out at some point. I still do it, but I found a different cadence for it. I found a different reason to do it. Like, the pressure is not the same. And I I know I mean, listen.
I'm looking at you. I see myself. Like, you're gonna get to that point where you're like, oh, I've given away everything else in my life to tell other people about this thing that freed me up, and now I'm just shackled by a different part of it.
Yeah. I I can see that. I definitely see that. And I have for the record, I definitely have the Scott type of personality. I think right now you know, the key is just to operate with with wisdom and balance.
Right now, being able to get out and do it and, you know, and it's it's twofold. Right? It's also very self serving because I've gotten to meet some of the most incredible people I'd have never met otherwise, random people from other states and, people telling me their stories. And I feel like I'm getting to do a lot of good right now. And so that for me is is enough right now.
Will I be able to keep it up at this pace forever? Because right now, I'm doing, you know, multiple events every month and traveling. Probably not. Right now, my my deal is, is it a a worthy cause? Is it a worthy event?
Is this fundraiser gonna move the ball down the field? And then beyond that, the litmus test is if I'm gone for whatever these dates are, am I gonna miss something key at work, or am I going to miss something important in my kids' lives?
A 100%. Yeah. Great.
Yeah. And if it meets all that criteria, then then I do it. Will I be able to do it at this pace forever? Probably not, but I'm I'm willing to do it for at least right now.
I I this summer, I did a thing I've never done before. And it's probably a thing that people who know the diabetes world would be, like, stunned by. But until two years I'd never gone to one diabetes conference that wasn't touched by type one. Like, I I do touch by type one every year, and I will continue to do it. But it's a one day event.
I fly in. I make nappy. I take a I I eat. I get up. I talk like a lunatic for nine hours.
I get on a plane. I go home. Right? And by Sunday afternoon, I'm back in my house again. But other than that, I'd never been to Friends for Life.
I'd never been to ADA, ADC, none of that stuff. And last year, I went to Friends for Life for the first time. And then while I was there, I had an experience where someone said, hey. I'd like to I mean, I can say who it's. Sugarpixel said, I'd like you to come and, like, be at my booth at all the events next year.
So this year, I have gone to ADA, which I think was in New Orleans. That by the way, there's telling. I think I was in New Orleans. Okay? Then I took then I took a 100 listeners on a cruise in in
I did know about the Juice Box Cruise. It looks awesome.
It is a lot of fun. It's not this one was nine days long with travel. The next one will be five days long, but still, for me, it'll be seven with travel. Right? This one was nine days long.
But the the secret about that that people listening, I guarantee you won't believe is I don't make any money from that cruise. It basically breaks even. It's just a nice thing to do, and it's a great experience. And I love, like, meeting people just like you said and all that stuff. But I don't walk out with a fat bag when it's over going well, you know, like, it's, you know, nine days I'm gone from my family.
Yeah. I also wanna say if enough people came on the cruise that I did make a fat bag, I would tell you that too. But at the moment, it it doesn't make anything. And it's not the intention of it nor do I think that's ever gonna be the outcome of it. I went to ADA.
Yes. I went to ADCES in Columbus. That I think I left on Wednesday and got back on Saturday or Sunday. I don't Sunday. I don't even know.
And I did Friends For Life again, which was six days or so. And I'm gonna go back and do, Touched by Type one in September. I'm exhausted, first of all. I'm and and I've traveled too much. I I didn't even fly to Ohio.
Like, when when they called me and they were like, hey. You know, where do you wanna fly out of to get to Ohio? I'm like, I'm gonna drive. I'm like, I've been I am so sick of being on a plane. Like, I'm gonna drive.
Yep. And and I that doesn't sound like as much as you traveled.
I do travel a lot. And then remember in the midst of all of these events. So I'm like you. I don't make any money on any of these. Typically, I break even because sometimes they'll cover, you know, like, flight and hotel.
And so I break even or lose money doing on all these to the point that my husband's like, hey. Listen. This has been fun. But from now on, if we're not at least break even, like, you can't go.
Yeah. I But
you've got a kid starting college. Right?
I do wanna be clear. At bare minimum, I'm breaking even. I there's no way Yeah. And and in fairness, like, in fairness, I made a little money going to ADA. I but I did the thing with Sugarpixel.
That's a breakeven because they cover me, like, getting into the event. And then I did I did a I did work for MiniMed while I was there. I interviewed some people at their event and everything, and, like, it'll get turned into a podcast and everything. But, again, after taxes and travel, trust me, I could have panhandled pencils on the corner and done just as well. Like, it's not like Right.
You know what I mean? Like, it's not I'm not I'm not your favorite pretty influencer who's like, I made a million dollars. Like, it's not like that. So Right. Right.
Yeah. Yeah. Or I made a video and
they That's for sure my phase of life. I'm in the I'm I'm doing it because I enjoy the work. I'm doing it because the causes that I go to these the fundraisers and the speaking events and all the things that I do, they're they're very worthwhile. And so, you know, that's that's part of the the gig right now. And and it is it's worth it to me.
There's so many really cool so I just did a fundraiser actually. So my first trip to the Hamptons. And, just did a fundraiser there. And the whole point, I was working with the Silverstein Dream Foundation. We raised the money for three more patients to add on.
So doctor Rakowski will actually be to add on three more patients, three more data points for phase one of the trial. So we'll go from the Eladon twelve to the Eladon fifteen.
Wow.
So, like, it's huge. And so that's the type of thing, I do breakthrough t one d events all the time. You know, I'm I'm traveling around and just, I feel very blessed to have had the opportunity that I've had, literally one in a million. And so I don't want to waste that experience or waste that opportunity to to connect with people and to educate people. Like, there are so many people that have no idea that islet transplants are even a thing.
They're blown away by the science behind all of it. There's all of these cool clinical trials. So, you know, I'm like you. I love to get out, and I love to, I like to meet new people. I like to help educate people, and I like to do fundraisers for good causes.
So, you know, we'll when we when you interview me again in six months or a year, I'll let you know my status of of burned out. But right now, aside for hating airport food, I'm pretty I'm still enjoying it.
Well, let me tell you something. If my cruise made any money, I'd invite you to come on it and pay for you to come out so you could tell people about it there. But I I I would whatever it cost, I'd be in the hole for it. And then my wife
and my wife would be yelling
at me. Yeah. Yeah. So I I I'm gonna like, it's not a pivot, but I'm dying to ask you this. And you know because I brought it up to you before we started to record.
I have been so I I explained to you, and I'm sure people listening know, like, I stayed pretty far away of the space. And by that, I mean, like, what other people are doing in diabetes. I know there are other influencers. I'm not unaware of that. I understand that there are people who make content.
I'm not unaware of that. I for all of you listening, and trust me, I can see some of you ripping me off blindly. I know you're listening. But, like, I don't listen to you. I don't watch your stuff.
I don't pay attention to what you're doing. If you have goals, I hope you reach them, but I'm not interested in what you're doing. I I I focus on what I think is the right thing to do. And I have taken what I'll call some crap in the last six months for literally not changing the entire format of my podcast and just turning it into, like, the Elodon, like, you know, megaphone podcast. And you don't care.
You don't want people to, like, you know, be better. Like, mean, I'm like, oh, okay. The and then in my my Facebook group where I have I'm not gonna lie to you. A lot of members. And and I don't allow a number of things in that Facebook group for consistency.
You can't talk about politics. You can't talk about religion. You can't talk and you there's some, like, pretty it's they're not crazy rules. You gotta be nice to people. Like, you know what I mean?
Right. Respect their products.
On there and and hate nasty yeah. Leave nasty hate comments on other people's posts. Right. Be be a basic decent human. Got
it. Try to be kind. Right? And Yeah. A couple of those rules are on purpose because if as an example, if someone's kid dies because they had a religious belief that they didn't need insulin, you can't talk about that there because at some point, it's going to turn into a religious battle.
You don't have to Right. Believe me. I've just been managing a group of 90,000 people in it for six years. I know what's gonna happen. Okay?
So we don't let that happen at all. Not not not differently. You can't say, Bernie Sanders is going to Canada to talk about, like, free insulin because that in five steps is gonna turn into candidate a, this party, they like, it's it goes that way immediately. And Right. It it it's not lost on me, trust me, that there are things that are happening in politics around type one diabetes that should be talked about.
And I hope you all talk about them ad nauseam. You just can't do it in my Facebook group because it's going to turn into you know what the problem is? Joe Biden is a Donald Trump is this. Like and so I and then you all just you know, the bigger thing that happens, Katie, which is, I think, really interesting is that it usually is only four or five people losing their minds. Yeah.
What that does is everyone else who sees it because that freaking algorithm someone find Mark Zuckerberg and talk to him. That freaking algorithm wants you to be angry. And so it shows it to everybody. And then their takeaway is the Juice Box podcast Facebook group, if they were if they were to see that, is a mean place where everybody's horrible. Nobody looks at it and goes, oh, this is just four people off their meds yelling at each other.
Right? Like so so because of that and because I know how much that group helps people with living with diabetes, I I don't allow stuff like that. You post something like that, it gets deleted. You don't get an explanation. It's no one's got time for that.
Okay? Like, it just goes. So when people are talking about Elodon trials, rock and roll talk about all you want. When you talk about you gotta go to your senator or your congressman, and I don't let that be in there. And then I take crap for, like, not wanting the cure to happen.
And I'm like, wow. That was a leap. But okay. So what else?
Because you don't have any personal investment. There's no one that you love personally that
you like to have I
don't wanna see you. Whatsoever.
What a ridiculous idea that would be if that happened. Yeah. I so point being is that there are people in the world who get so focused on their part of the bigger story that they'll they'll co opt part of my story to to try to make their own point. And it happens online a lot. So I've seen two things happen around this this research.
I've seen people turn it into clickbait because they just are trying to grow a channel, and they want people to click. And yelling about a cure is a sure way to get somebody to click on something. And I've seen people tell you or me or other people that the way you've chosen to talk about it is wrong. And I would be, like, genuinely interested to hear about your journey through that part of the Internet.
Yeah. So at the end of the day, one thing that you'll find about me is I'm not a super controversial person. Like, I'm not going to I kind of run my life like you run your Facebook group. If you know anything about type one, and if you're listening to this podcast, I'm I'll safely assume that you do. You know that while politics does play a part, as far as I know, there's not a political party not touched by type one.
If there is, do let me know. I'll switch immediately. So it's a nonpolitical issue. People do take and here's what I see happening. And this has happened like, I've seen people, like, stitch my videos with this as well.
Or the hard part is when you're talking about really deep science, like something like a Vertex Trial or Sonar Elodon, there is a lot of science that goes into more than you can get in, like, a thirty second, sixty second, two minute reel. Right?
Yeah.
So people will take one clip or one piece of an interview and highlight that and turn that into clickbait or not put out all of the information, and then people are very misled. That, coupled with there's definitely a lot of drama that happens between famous creators, which I'm not one. I literally just exist. And so I try to do a good job of not getting down in the weeds. If you're a person that's that's a creator and you're talking about a cure, wanting a cure, working for a cure, that's great.
I appreciate you. I'm happy to answer questions from anyone. I'm not going to get down in the mud. I will never participate in a smear campaign, even if there's somebody who comes on and and bashes me personally. That's fine.
I'm you won't see me jump back and fight that. That's not my personality. I'm a peacemaker by heart.
Yeah.
And I think the type one community loses a lot when we get involved in a ton of this outside drama that honestly takes away from the real point of what we're trying to do. And it it makes everything into a really dramatic emotional battle. And for people that are living with type one, we have enough emotions and drama. We're good. And so, I do like you, I I don't watch just a ton of of other diabetes content.
I do to some degree because that's, of course, what's all over my algorithm. But for the most part, I just kind of live my life and try not to be involved in any of that. I'll answer questions from anybody. I'll do interviews with anybody. And beyond that, I think a lot of the the drama and the clickbait creation, all of that is, to me, just a detraction from from what we actually need to be focused on.
And I I don't like it, and I'll stay out of it. And I cultivate my Facebook feed like you cultivate the juice box page. So, you know, every once in a while, bless their hearts, like a random type two diabetic will stroll in and be like, could this be good for someone who has type two? And then for some reason, type ones are like we can be the the nicest or the meanest. And so all these type ones will come in and leave me comments and be like, no.
Clickbait, politics, and staying out of it1:07:13
It's not for you. Just go on a diet and things like that. Those are the type of comments I just go through and and delete and move on with my life. The the world is a hard place. Type one is a hard disease, and I refuse to participate in any of that.
I my mama raised me better than that, Scott.
I appreciate it. I I I listen. I saw someone like, I saw someone do something that I find to be despicable, and then I saw someone else engage with that in a in you know, fighting with them, which, you know, pushing back. But as it was happening, I was like, they're they're just doing this for views. Like, the no one's no one's like, you see one person doing something that's clearly grifty.
And then you think, what what does it help to, like, push back at them? Like, all you're doing is putting attention on them. Like, you're giving the algorithm what I want. You're gonna show more people. So it's not about keeping them quiet because you know enough to know that if you engage, they're gonna get more engagement.
And so you're engaging to get engagement for yourself. And I'm like, oh my god. This is despicable. Like, the whole thing just like I don't maybe you don't even have an opinion about it. And I don't see it see it.
Meaning, I don't follow them and they're not popping up in front of me. I'm, blessed or cursed depending on how you think of it with a with a group of people who will be like, did you see that? Did you see this? Did you see that? And I'm like, oh, I don't care.
Don't show me. Like, I I don't wanna know.
Yeah. Don't mention her on my phone because I don't want the algorithm to automatically put it in there.
Yeah. And then and then there would be times where, like, this person's mentioning you directly or this one is or that one is. And I'm like, do not respond. I would never, first of all, be just like you would never get involved, would never dream of responding to it nor do I care. But there are people who, like, you know, love me, and they're just like, no.
I'm gonna, like, defend you. I was like, do not like, I I am of the opinion. If you defend me in that situation, I I don't wanna talk to you. Like, I'd that's how much I don't wanna be involved in this. Like, do not connect me with this in any way, shape, or form.
And but at the same time, it's hard not to be angry about it when when it it turns into every other thing on the Internet. Now, like, you could say it's diabetes people. It's not. Like, in, what I've learned about this, I I use this as an example all the time. I am I have a chameleon.
Okay? It's a thing you don't know about, Katie. It doesn't matter. It's a it's a really cool reptile that I enjoy keeping.
Oh, I know what a chameleon is. I didn't know that you had one.
I I have a couple. Don't tell people. It makes me sound creepy. But I I inside of a chameleon community, they have every problem that I have inside of a diabetes community. Literally, just take out the word diabetes, replace it with chameleon, watch the arguments happen.
They're the same exact arguments. They happen over and over again. I did a thing before you and I started talking. I just went to, like, a chat prompt and asked it what people will say when they're intersected with the idea of of a of a a cure for diabetes. And the responses are not curated from the Internet.
It's literally just an LLM going, this is what I think the human brain would respond to in all the different ways. And I guarantee you if I went through these, you'd say, yeah. That's happened to me. That's happened. That's happened.
That's happened. That's happened. Because people are fairly predictable. That's, you know, how, chat GPT works, actually. It it just knows what the next word's gonna be.
And so and so knowing that knowing that people are driven by whatever basins things they have or whatever their perspectives are or whatnot, I don't I I'm not mad at them. I don't not understand. It's when it gets to the part where it turns into, I can make a business out of this. I can make my channel bigger so I can sell ads, that's that's the line. Like, we if you ask me personally, what do I think of you if you're doing that?
I'd say, I think you're a scumbag. And and and just leave other people the hell alone. You you know what I mean? Like, it's such a weird thing to look at me and go, you're not doing it right. Like, well, you do you do it then.
You you know what I mean? Like yeah. I mean, if you know if you're so smart, get out there. You know? Like, so Yeah.
This is this is you're talking to a person who gets corrected all the time, Scott, on the details of a clinical trial I'm actually in. And so so nobody understands what you're saying more than I do because I have people message me and leave comments all the time correcting me on things and telling me how it really is and all of these different things. And, you know, there's a there's a part of me that so I'm I'm I wear my heart on my sleeve. I think, that's that's just a key part of my personality Mhmm. For better or for worse.
And so sometimes some of the comments or messages that I get really do get to me and hurt my feelings To the point that I've had a couple of moments in there where I'm like, I think I'm actually done. Like, I'm just done on the Internet. And then those are so few and far between. And the rest of the conversations that I have are really powerful, and it's it's about educating people, and it's about helping people feel encouraged. And it's about living life with type one and showing people what life looks like after type one and all of the progress that's happening, but all the work that we still have to do.
And so at the end of the day, that's what I'm here to do. And, you know, anybody who wants to try to turn that into something else, shame on them. And I I'm like you. I won't participate in that.
Well, you've learned an obvious, like, and great lesson, which is that, you know, the, you know, the silent majority is what exists, whether it's in real life or on the Internet or no matter where it is, is that most people are reasonable and look at you and go, oh, that's interesting. I'm glad to know that now. I don't need to comment on this. And when someone is responding back in anger or through ignorance or however they end up with, you know, being incorrect or or punitive or something like that in those situations, like, you realize that's not most people. But when you go on the Internet, even though it's it's not most people, it seems like everybody because they're the only ones generally talking.
And and that that
And and the angriest people are always the loudest. Right? So the kind people, they don't say anything at all or they say thanks for sharing. It's the angry people that are going to to leave the most comments and be the most inflammatory. And once you you you really do have to learn that lesson to survive on the Internet.
For sure. Well, I'm glad you're making your way through it. And I love that you're out there talking to people and and, you know, spreading the word about it. I is any of that gonna help anything? Like, when I was talking in the short term what do I mean by that?
Like, when I was talking to the doctor, like, the one thing I made sure to get out of him was the viability of, like, this spreading from nine people, 10 people, 11 people to a 100 to a thousand because, you know, there's 2,000,000 people who could use this. So we got 10 now, eleven, twelve, whatever. It's not really important. Like, there's a handful now scaling it to even just say ten percent. Let's just say we you know, I don't know.
Let's just say we wanted to cover two hundred thousand people with diabetes. That's not a thing that's like you said earlier and like the doctor said when he was on with me, that's not happening soon. And so, like, how I don't know I don't know what we're supposed to do in a world where this is probably how old are you?
I am. I've just turned 40.
Yeah. In your lifetime, they're not gonna be able to give this to 200,000 people. Like, that'd be
Not that'd not Tega with cadaveric islets. No. I think what you'll see that's happening this is this is my guess. I think my educated guess, because I irritate all the scientists and people in this space. I think what you'll see over the next few years so, hopefully, islet reclassification happens.
That that doctor Rakowski did talk about because that actually opens up trials can move faster, and, you know, next year could be a thousand people instead of 12. And then beyond that, that next piece that has to happen is scalability. So that's where we're waiting on some sort of a lab grown scalable islet cell that can be used maybe in combination with something like TEGO. You know, in a dream world, they can get to a place, which a couple of companies are working on this. They're not quite there yet.
But in a dream world, get to a place where there's no immunosuppression that's needed. Right? Like, that's the dream for everybody. That scalability is kind of the next big piece. And then we're still not done because then it's what you and I talked about after that.
The next big battle is affordability. Okay? The the procedure exists or the islet cell exists or whatever exists. So now what? So now how do we make that where your average family is, of type you know, that has a couple of type one kids?
How do we make it where it's a procedure that they can actually afford? And so the the road ahead of us is long. That's for sure. I think that the difference is for the first time in human history, there's actually a road. You know, we've been living for a very long I mean, for the the entire world up till the last few years, of living with this idea of, like, maybe one day in some form.
And I think slowly the narrative is shifting from if to a narrative of when, but that's still not tomorrow. So at the end of the day, it's what I've already said. It's what you say all the time. It the cure won't be here tomorrow, so take good care of yourself. You know, keep keep your body as healthy as you can.
Keep learning new ways to manage this disease. There's other incredible technology that's coming out to help us with that in the meantime. And I think that's what the future looks like. I do think the the cure or functional cure, I do think we'll see that in easily in my lifetime. I think we'll see it in different forms, to be honest with you.
I think there will be multiple options on that. But there's we still have a road to get there. And so for for my end, educating people about it, raising money and awareness for it for it, That's all I know to do. You know, I'm not a scientist. Thank goodness.
God help us if I was the brain in charge of all of this.
I I say all the time, if it was up to me, we'd still be 45 feet from Plymouth Rock going. I don't know if
there's a there's a creek.
I don't know how we're supposed to get over it. I guess we live here now.
And so get this is it.
Yeah. Yeah. I'm the wrong guy for that. I have two thoughts off of this. So first of all, about taking care of yourself right now, let me just go out on a limb and tell you this.
If you can, AID system, mix it with the GLP, pre bolus your meals, understand the impact of fat and protein on your blood sugar. It's gonna get you really far in this world. You can trust me or not. On the idea of, like, one day at not needing an immunosuppressant, are you telling me that they wanna lab grow cells that are are not, like, what, visible to the
Yeah. Uh-huh. Yeah. And they're like, that science is already being worked on. Now it's not gonna be here tomorrow, but they're already working on a couple of different trials.
They're actually working on gene editing, and then they're working on a version of a cell where you would not need it. The cell itself hides from the immune system. Now is that gonna be here tomorrow? No. But I think eventually that's what when we talk about a cure, the dream is like a pill that we all take and we don't have diabetes anymore.
That's not going to happen.
Yeah.
I think cure in our lifetime is going to be an islet cell transplant in some form. But, you know, in the meantime, it's kind of the steps to get there. Like, for me, I'm a happy lady with my TEGA Prubar and my islet cells living my best life. But I think that's one iteration. There's going to be other better versions of that that are coming along that they're already working on.
The scalability piece is huge, and there's a couple of different companies working on that. But, yeah, that's I think that's what the cure looks like. And then, Scott, when all of that's said and done, we still want rest because the other piece of that is, you know, curing diabetes is is great and important. Beyond that, there's this idea of early detection and preventing it in the first place, and there's real real signs and progress happening on that front as well. So when I tell people I feel really encouraged by all of the science going on, it's not just the Elenon trial, although, obviously, it's given me a new undiabetic life.
So it that is very exciting. But across the board, there are there's so much science, like, so far beyond the scope of what people even realize that's actually happening and being done right now. So on the one hand, that's beautiful and so exciting. And on the other hand, it's frustrating because there's only a handful of functionally cured people bebopping around out there, and everyone else is still waiting. So it's both things.
It's a mixed bag. But I do hope that people feel encouraged when they think about the science and the things that are going on. There's some really, really cool stuff that's happening by people far smarter than I am.
Yeah. I know. I'm I'm listen. I was watching this, interview the other day, and this guy was talking about health and AI. And he he his message was, don't die now.
He's like, we're getting really close to stuff. He's like he's like, seriously, hold on if you can. And, and I'm like I was like, I hear what you're saying, man. And and, hopefully, people will see the through line with this, and maybe they won't. But for the entire time I've been doing this, meaning writing a blog since 2007, right, making a podcast since 2015, people have come to me and said, can you please share Arden's five zero four plan with me?
Because I put together in 2000 and, my gosh, 2009 maybe, I put together a rock solid five zero four plan that Yeah. That's been shared around the country. Like, I've seen Arden's, like, photocopied five zero four plan in other people's folders. Like That's awesome. Like So I I I did this thing.
And at the at the time, it was all on paper. Like, right, like, you didn't like, so people would be like, hey. Can I have all the versions of her '5 zero four? I'm like, I don't have that stuff. I used to hand it to them.
I never thought twice about it. You know what I mean? And I did I did have one or two of them left over. So I took them, and I thought, well, I I would like to make them more shareable, but I you know, Arden's names on it, like, stuff like that. And I just kinda gave it to I gave it to Claude, to be perfectly honest.
And I was like, hey. Can we make this more shareable and, like, editable so people can edit it themselves and do what they want? And then I, like, I I put that prompt in, and I saw what it gave me back. And I was like, Well, that's not all the ideas. This is just the ones I came up with.
Where do I come up with them from? I came up with them from the ADA, from JDRF, from other couple, like, you know, like, rock solid online sources for five o fours. And then I was like, let's make a list of all the great resources online for five o fours. Let's pull all of it in. And in about twenty minutes of prompting and building, I now have a resource on my website where you go in, click on a bunch of boxes, put in your kid's name, and your five zero four plan pops out the other side.
And so cool.
Yeah. Yeah. And not only that let me take a minute to pimp it. Not only that, you know, it it will take you to an ADA page where you can answer important questions about your state, which will then affect what you can ask for or what you need to ask for in your plan. It goes through things in nine different sections from, like, government documents and eligibility to low blood glucose, the food snacks and meals.
You go through each one of them. It gives you the thing that you might wanna ask for. It ask it tells you, like, is this a standard ask or something else? If there's a legal right around it, you can click on it. It tells you why it's in there.
And if it's a thing you don't want in your document, you just uncheck it. And then you get to the end, and you can put it out as copy text. You can download it or print it as a PDF. And I'm telling you that after that's done, it'll give you a list for a substitute teacher sheet, which will take all your asks and put it down to a one page for substitute teachers. It will give you a list of things that the school might say to you and what you can say back to them.
It tells you how to get together what you need before you walk in. It gives you ideas of, like, things they might say to you that would make you go, that doesn't sound right. Like, something like, he'd be better served at another elementary school. And then it it tells you how to respond to that or why you don't wanna hear that. It helps you get the paperwork together before you go in.
It gives you, no kidding, if they say no, it tells you what to how to respond if they say no. And then you can go through the document. And anything in your document that they push back on, you click on it. Just click on it. And it, like, I just chose any staff member who suspects student name is low will act blah blah blah.
Like, it's a sentence from the thing. It gives you the, the item that I clicked on. Any staff member who suspects the student's name is low will act, remain with student name, provide fast acting glucose, and summon trained personnel whether or not she is in a designated training person, blah blah. So if they push back on that, here's what you can say in return. This language tracks the ADA's own sample five zero four plan, the January 2025 update, blah blah blah.
And then it gives you a follow-up email to push back with again. I'm telling you, Katie, that I made this in about three hours. Okay.
Yes. Yes. It's an trust me. It's AI is revolutionizing, you know, diabetes care. I love everything you're talking about with the five zero four plan.
I mean, that's for a parent, you know, diabetes, the learning curve is steep, and it's so overwhelming. So having a resource like that really is an absolute game changer.
I brought it up because I want people to know about it, but I brought it up because it's not my thoughts. It's it it it tells you where it all came from. Right? It came from ADA. It came from, like, you know, a college board, a department, ADA settlements, office for human or for civil rights compliant process.
You can see it at the bottom of the page. All the places where it gets the information. My point is is that all that information lives on the Internet somewhere, but it's not coalesced. And and my point around health is is that all this information lives somewhere, and I go back to what that guy was saying in that interview. Don't die right now.
We're about to, like, draw some lines between things here. And this is how the lines are gonna get drawn. And if things speed up, this is somewhat you know, how it's going to happen. Like so I don't know. Like, you said there's gonna be all different kinds of ways to get cured in the future to have, you know, like, you become undiabetic, which I'm a 100% calling this episode undiabetic life because you said it earlier.
But, like but one day, all those ideas are gonna get yanked together, and somebody's gonna go, oh, if you put that one with that one, look what happens. Or if we bring them all over here and put them in one think tank or who knows? Like, I don't know, but I do believe it could speed up. And I would tell you, for the first time in my life, I I'm not unsure that Arden maybe can't stop using insulin someday. Yeah.
Like, that that's how I feel about it right now.
And that's what I'm talking about when I talk about that shift that's kind of happening is and it's not one thing. It's like a series of cool breakthroughs and cool science. And so, yeah, I I I feel very hopeful for Arden. I certainly feel hopeful for people living with type one and certainly certainly for kids being diagnosed with type one right now. I think the future for them is going to look like a bunch of different options, and I'm excited about that.
I I like that there's multiple people attacking this from different fronts. That's exactly what I want. I don't want one company to come through with the cure.
Yeah.
I want multiple companies working on this and giving people the option that works best for them. So I'm excited about it.
I would say too, that if people hear things like gene editing or they're gonna, like, you know, make a cell that's man made or something like that and you think, I don't want just keep in mind that, like, three years ago and for most of my life, I was seventy pounds heavier than this now. And when you hear that, I urge you strongly not to think, oh, yeah. Well, they shot something in you that made you eat less because that's not everything that happened to me. A lot of different things happened. So when you said one day they might just take, you know, edited cells, which to me says man made medicine, and put it into somebody and their body won't be able to reject it and it'll help them make insulin.
I didn't hear anything different than once a week, I inject a peptide that, for some reason, lowers the inflammation in my body, helps me, to digest things properly, keeps me from being too hungry when I shouldn't be, and all the other things. Like, all I heard was somebody found a way to turn a dial in my brain or in my you know, somewhere in my it doesn't even matter where. Like, something in my body got adjusted, and it works better now. And Right. That that's how I see what you're talking about.
Like, one day, they're just gonna put something inside that you didn't have that you needed, and it's either going to do a thing that something's not doing or help something do something better. Look. I talk about this all the time. Arden has a GLP for insulin resistance, and she also has a bit of a of a needle phobia, which I'm happy to say she is getting through. But it's been a slow, slow process.
Right? Last night after I don't think she took her GLP for two weeks. Like, she she took it, should have taken it again. I think she should take it about every nine days. That's when I see it start to, like, kinda wane on her.
But, but instead, it went more like fourteen or so days. I did not know, meaning she didn't tell me she shot it. Like, I was unaware of that. But she shot it last night, and I can tell you that I know from looking at her CGM. That's it.
Like, I woke up this morning. I thought to myself, oh gosh. I haven't like, I I don't remember thinking about Arden's blood sugar at all. Like, I will take a look at it and make sure everything's, like, copacetic. Right?
And I look, and for twelve hours, like, literally for twelve hours, her blood sugar has been, like, 87. 87, 88, 89. And that's just the readdition of the GLP. Now she it's overnight. She's not eating or anything like that.
And it'll take about a day or so for it to all kinda, like, up again. I don't wanna use too many technical terms, Katie. And, and then
You're you're a professional, Scott. I can see that.
She's gonna have to she'll have to, like, make some adjustments to her, settings maybe because she but also at the same time, she's on an automated system, so it might be enough, like, it can move with it. If you could see her stability overnight on a GLP versus her stability overnight on the AID, which, by the way, is still really impressive, you would say to yourself, I would like to find out how to do that too. Like and
so Yeah.
Yeah. I I I I'm up to better living through chemistry. I think you should probably have a T shirt that says it. But, I mean, honestly For sure. You're you're I'm so happy for you.
I know I don't know you, and it probably feels disingenuous a little bit. But, like, I am genuinely happy for you. So
Well, thank you. And I, you know, I appreciate you giving me a chance to come back on and talk about it. I'll I'll keep you actually, to Chicago tomorrow is my next Chicago visit. So Good trip. I will I will be there for my next.
I'll be back in the airport tomorrow doing that stuff. But, yeah, I appreciate you having me on to talk about it, and I hope your listeners know a little bit more about kind of what it's like and the excitement that's happening. And
Where can where can they find you if they don't know?
If they don't know, I am katiebethhand or calamity katiebeth, and I'm on TikTok and Instagram and Facebook. And I just started YouTube where I'm trying to kind of put everything together so people don't have to if they wanna kinda watch the journey from the beginning, I'm trying to make a playlist so they don't have to go through, like, a thousand Facebook videos to start from the beginning.
So That's awesome. Actually, I'm gonna ask you when we get off. Give me a half a second because I I wanna ask you if you know how to contact. I am so genuinely interested in talking to the person who left the trial of their own accord because they Okay. Not because they weren't having success, but because they didn't enjoy they didn't I guess, they didn't like the process of of the infusions is what the doctor was saying.
But, like, I would love that, I think, would be an amazing conversation to have with somebody. So, anyway, I'm gonna see pick your brain to see if you know who that person is.
Perfect.
Thank you so much for doing this. I really appreciate it. Hold on one
second. Alright.
To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you. Twist requires a prescription and is indicated for people with type one diabetes six and older. Arden has been getting her diabetes supplies from US Med for years.
You can as well. Usmed.com/juicebox or call (888) 721-1514. Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM. They make, of course, the Eversense three sixty five, and that thing lasts an entire year.
One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. Check it out.
Let's face it. Diabetes is tough, but it's easier when you have a community around you. So if you're looking for a great community around type one diabetes, check out the juice box podcast private Facebook group. Juice box podcast type one diabetes, but everyone's 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 the juice box podcast private Facebook group. Juice Box podcast, type one diabetes on Facebook. I promise you it is the most unfacebook like experience that you'll ever, ever find. What a great group of people. I don't like saying this usually because it dates the ad, but right now, there are 86,000 active members.
86,000 people in there who might have your experience, know what to say, just be a great shoulder to lean on. Don't be too proud to find a community. It really does help. And it's completely free. Juicebox podcast, type one diabetes on Facebook.
I just wanna say thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're not subscribed, subscribe in a podcast app. It really helps Apple Podcasts, Spotify, or whatever your favorite audio app is. Like and subscribe.
Where to find her1:35:11
You know what the kids say on the YouTube, like and subscribe. It really does help. And if you're already subscribed, please tell a friend or your endo or somebody you think might enjoy the podcast as well. Word-of-mouth is the only way that it grows. Once again, I've been Scott.
You've been fantastic, and we'll be right back with another episode of the juice box podcast.
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