#672 Defining Diabetes: Antibody

Scott and Jenny Smith define diabetes terms

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny explain Defining Diabetes: Antibody.

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

Scott Benner 0:00
Hello friends, and welcome to episode 672 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast, Jenny Smith and I are going to define antibodies, auto antibodies, antibodies, auto antibodies, antibodies antibodies WHAT THE HELL ARE antibodies antecedent here we go please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before making any changes to your health care plan. We're becoming bold with insulin Are you a US resident who has type one diabetes or is the caregiver of someone with type one because if you are, you can support the T one D exchange and research for type one diabetes by going to T one D exchange.org. Forward slash juicebox. When you get there, join the registry fill out the survey the whole thing takes fewer than 10 minutes and you are going to help people with type one. You're also going to support the Juicebox Podcast. I don't even want to stop talking now. My voice sounds amazing in my ears. T one D exchange.org forward slash juicebox this episode of The Juicebox Podcast is sponsored by us med us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor from the pod dash, the number one fastest growing tandem distributor and the number one rated distributor index. com customer satisfaction surveys. US med is a place where you get your diabetes supplies from most of us use them right? Most of us are using some sort of an online Wait a minute, are you not getting your supplies online? Okay, hold on. First of all, it's super easy to get your supplies online. You just are you're not doing this. Alright, hold on a second. Let me get a sip of water I gotta explain this whole thing to you. So we used to use another company, we've actually used a couple of them. And in the past they've been you know, spotty, let's say spotty in their customer service. But us med prides themselves on their white glove treatment of their customers. US med has an A plus rating with the Better Business Bureau and they want you to get better service and better care than you're accustomed to getting now. US med always provides 90 days worth of supplies and fast free shipping. You can get a free benefits check right now at us med.com forward slash juicebox or by calling 888721151. For us Medicare is everything from insulin pumps and diabetes testing supplies to the latest CGM including libre two and Dexcom G six. They accept Medicare nationwide, and over 800 private insurers. This 888 Number is dedicated for Juicebox Podcast listeners. Call now 888-721-1514 Get the service you deserve. Get your supplies without a big hassle. US met us med.com forward slash juicebox. Look, everybody these supplies are going to be common forever and ever. I'd love it if you had it set up so that it just happened and you didn't have to think about it. That's how we have it here. And it is a real it's a weight lifted. It's another thing you don't have to think about. Let us med think about that. You go live your life we've talked about antibodies in thyroid episodes. Yeah, and other places. I am told by Isabel who helps me run the Facebook page that people are confused about antibodies. And she said to me, please do a defining episode about them put it in one place where they can find it. It's easy to understand. And I said okay, as well. I will absolutely do that. Now here comes the problem. I'm still I still get a little confused as well. And I know it's just because I haven't looked at it closely enough. If you said to me right now, what's up? I'm not gonna look at anything. I'm not just gonna go off of what I remember right? Then you're gonna you're gonna tell me if you said to me antibodies in conjunction with type one diabetes

I would say something like, your body has antibodies that are meant to do stuff, fight illness or disease or whatever. And if you have type one diabetes, or if you are predisposed to type one diabetes, there are antibodies in your system that are likely to go get the beta cells in your pancreas at some point, and they don't belong in your body. And I don't know if that's right, that's literally the best I can conjure up out of my mind. Just told

Jennifer Smith, CDE 5:40
me, No, not, I mean, not really wrong, I think it's the way that you think about it or see it, it's, I mean, an antibody in general, whether it's for diabetes, or thyroid or other, you know, issues. an antibody essentially, is just a protein that your immune system uses to essentially take care of a foreign object via a virus or, you know, bacteria or something that's potentially harmful, right? I mean, that's, that's the gist of an antibody. But in someone specifically with type one diabetes, and something in the body triggered an immune response. And so your body, unfortunately, has identified beta cells as the foreign object. So your body produces antibodies to take care of this foreign object, which technically isn't foreign, but for some reason, the body now thinks that it is. So the antibodies are I mean, they're there, they would be identifiable in the bloodstream in a in a blood draw, if you had antibodies that were specifically attacking the beta cells, right. So we can do blood draws to test for antibodies, we can do blood draws to test for insulin antibodies. I mean, one of the very well known ones that most people definitely have done at diagnosis is the GAD antibody. And then, you know, if you've done any testing, or had any family members who have done testing through like TrialNet, or any of those types of places, there are, I think, at least two other antibodies that they're kind of looking for as well, to identify, so in general, an antibody is just it's really supposed to be there. That's something that your body uses. Unfortunately, it becomes something not great, because of the way that your body is identifying the beta cells, which is now seeing as like a foreign invader,

Scott Benner 7:49
okay. So for auto antibodies are markers of beta cell autoimmunity and type one diabetes isolette cell antibodies ICAA against cytoplasmic proteins in the beta cell, antibodies to glutamic acid, well, the carbo laisse which that's the GAD 65, right? Insulin insulin auto antibodies, which are IAEA, and I A to A to protein tyrosine, phosphatase. FOSS. Wow, okay. All right. So not everybody has these, the these like, like, like, let's just take gad as an example, right? Like, if I tested the population, most people would not have that antibody.

Jennifer Smith, CDE 8:36
They shouldn't. I mean, honestly, if you're testing positive for the GAD antibody, it indicates an immune attack, which is really points to type one diabetes specifically. Okay, so general person should not have gad antibody.

Scott Benner 8:50
So if you have it, where do you work? I don't understand where you get it from? Like, how does how does one body Jenny that are we outside of your depth?

Jennifer Smith, CDE 9:01
I don't know. I think if that could be, I don't know if it's out of my depth. It's certainly out of the realm of

Scott Benner 9:09
understanding at this point.

Jennifer Smith, CDE 9:11
I think it's to my like, limited explanation. It would be the reason that there's no

Scott Benner 9:18
cure is because we don't know how that happens. We don't

Jennifer Smith, CDE 9:21
Okay, right. I mean, some other really, really intelligent scientist and because sure could say hey, we're pointing things in this direction or whatever. And I'd be like, Okay, well, that's really fancy.

Scott Benner 9:35
So for reasons that may be at this moment, beyond understanding as a person can develop one or all of these antibodies, and then what you're waiting for next, it's the other shoe to drop it's for you to get ill sick, stressed something, your immune system to be like alright boys, go attack those invaders and they run right past your Your virus and go right into the pancreas and go after your beta cells. And that's

Jennifer Smith, CDE 10:04
why there are and for the GAD, I think I was actually wrong. I think that there are I think there are other autoimmune conditions if I'm not incorrect, I think thyroid, you may have gad antibodies present. Okay. And I am I think there's another autoimmune disorder if I'm correct, that that may be something that would show positive, I would have to again, look that up. But I'm, I'm quite sure gad is also present for thyroid. So anyway, um, you know, in terms of a virus, that's why many people believe that people with type one may have had a virus, which was like a switch. It's like a light switch. i That's kind of how I think about it. My brother probably had the same virus that I had, if the reason that I have type one is from a virus, I don't know why I have type one, I'm quite sure that my brother and I living in the same house probably had the same viruses, why my body decided to interact with that virus and the switch turned on and decided to flip and say, Okay, we've taken care of this. But now we're also seeing these body parts or these pieces of the body of the beta cells as foreign objects to. So why one person versus another? I don't know.

Scott Benner 11:31
Yeah. I would again, I think I've said in other episodes, I don't know for certain, but I would bet money that Arden had Coxsackie virus, and then she got type one. I've heard a lot of people specifically say Coxsackie. And then type one. As a matter of fact, we had the CEO on a prevention bio. Hey, it's Scott, I know I put the ad at the beginning of the episode today. I tricked you a little bit. But I still need to pop in and tell you that US med offers a free benefits check and you can get it at us med.com forward slash juice box, or by calling a special number just for Juicebox Podcast listeners 888-721-1514 us med carries everything from your insulin pumps, to your diabetes testing supplies, go check them out, who was on to talk about Tomislav, which I always mispronounce. And later I will get a message after this goes off where they say you've pronounced it wrong again. But I know that he was talking about how one of the ways that he thought you could significantly cut down on type one diabetes is to inoculate people against coxsackievirus. Yeah. And he said so that to me, I mean, if someone's saying that, then they've seen enough impact that way, but they're saying like, don't get me wrong, like Coxsackie doesn't make type one diabetes. Right. But if you have these auto antibodies, which I'm assuming Arden had, then you get Coxsackie. I'm, I'm thinking what he was saying was that there's more frequency to go from a person who has auto antibodies, who gets Coxsackie to type one, then there is a person who has auto antibodies, and they get the flu, and then they go to type one, etcetera, like something like that. Right. So yeah, there's probably a mechanism in there that I mean, we don't understand. Maybe somebody else does, but and the Coxsackie

Jennifer Smith, CDE 13:31
is certainly one that's well identified. I mean, as you said, you can look for it, you can easily find multiple noted references to Coxsackie and type one. Yeah. But it is also a more of a childhood disease illness. Right? Which then also leads to the questions of, well, if an adult didn't have Coxsackie, then why all of a sudden, is this random adult who has no family history of type one at all? Right? Why is it all of a sudden there?

Scott Benner 14:06
Right? Well, so is it. So let's keep talking about that for a second. It's possible you could have these I mean, it's possible that there are people who live their entire life with these auto antibodies and never get type one diabetes, right. And so, I hear from, I mean, this podcast has allowed me to talk to so many people, that there's no longer an age that I think you can't get type one diabetes after, you know, like, I know that people used to think, you know, it was kind of like that weird slippery slope of, you know, the JDRF was the Juvenile diabetes Research Foundation. So people know that it's juvenile diabetes, you can only get it if you're a kid, obviously wasn't true. But even in my like, you know, uninitiated understanding, if you would have found me before Arden had type one I would have told you like if you can get it like 30 years old, you're not going to get diabetes like type one. Right? And that's how people would think about it in the past.

Jennifer Smith, CDE 15:05
Yeah, I mean, I've worked with people who've been in their 60s, upper 60s, I have one woman who was 71 when she was diagnosed with type one. So, you know, there's still certainly no age that it is not possible.

Scott Benner 15:21
Right now, I think it's point, I want to say 73 is now the oldest person that I've interviewed. Really? Yeah. But I mean, what the hell, you know, right. And talk about, you know, thinking you made it mean, really,

Jennifer Smith, CDE 15:37
this far in life. And this is what I get handed now, like, what

Scott Benner 15:42
the heck is done? You know, I thought I was all good. So I think that, if I go back to what Isabel saying to me, about that people asked about this all the time about the antibodies and not understanding them. That is what I want them to leave this episode understanding is that, you know, first of all, you didn't do anything wrong. Right? That and I think that's, I mean, if we could kind of shift gears away from a more medical to maybe a more psychological for a second. You didn't give your kid type one diabetes? Like, No, you didn't give it to yourself? It's not possible, you know, like, you either have these, these antibodies within your system, or you don't. And like Jenny said earlier, modern medicine can't tell why at this point. And if it was just that you watch the prices write too much, or you you know, you know, or you had too much ice cream or like something like that the things that people knee jerk worry about when it first happens, like, Oh, my God, you know, I mean, you know what I'm saying? Like, people come up to you. Not always, but there are people, a lot of people who have personal experiences where an uninformed person will come up to them and just say, like, What, did you feed that kid? You know, how did you do? Absolutely. Right. And that's a big problem. And then it's a bigger problem if it just happened to you. And you and you don't know that, that that couldn't be the case. Correct. I

Jennifer Smith, CDE 17:08
mean, when I was first diagnosed, my mom's coworker, my mother was a grade school teacher. And one of her co workers said, Well, I and I only her overheard the conversation between my mom and my dad, my mom did not tell this to me directly. But she was telling him that her co worker had said, well, thank goodness, it's just juvenile diabetes, she'll grow out of it. Right. I mean, and again, this was, you know, in the 80s. So clearly, a lot of I mean, this information is still out there. I'm not saying it's not but I mean, that's the misnomer of juvenile diabetes to, it'll be, it'll be over soon. You know, as soon as like, you turn 80. And magically, like, I'm not a juvenile anymore must be gone.

Scott Benner 17:55
Arden diagnosed in 2006. And I've lost count of the amount of people have asked me what age children outgrow it. Right. As if, by the way, have you ever outgrown anything? Like, if you ever heard of like, oh, you know? I don't know. He can't keep he can't process protein. Oh, he'll outgrow that. You don't outgrow? There's in the history of the world. I've never heard anybody say, oh, cancer, don't worry. You'll Yeah, like no one's ever said that. But for some reason, it is a really interesting example of how, how the wording is impactful just by calling it juvenile, you make it feel like once you're an adult, it doesn't exist anymore. Exactly. But I just one, listen, I want people to know that you didn't do anything to cause you're type one. Type one. And and I,

Jennifer Smith, CDE 18:44
you know, the question that I also get kind of along the same line is from a lot of the adults that I work with, who have children, they themselves as an adult have type one. And the question always comes up, either should I get my kids tested? Or how likely is it for my child to get type one? You know, quite honestly, there are statistics, if you really wanted to look things up. You certainly could look up some statistics, but it doesn't necessarily say your child because you have type one is 100% going to have type one too. So in a causative. If you have type one and your child ends up developing type one, likely there's a genetic link there, but you didn't necessarily cause that piece to turn on.

Scott Benner 19:29
Right? Like if you have brown eyes, and you don't like them, and your kid has brown eyes. It's not your fault. Your kid has brown eyes. So it's a genetics work. Yeah. And I understand how people feel like I mean, if I'm being honest with you, I wondered for a really long time what I could have done differently, you know, and so I was a stay at home dad. So I was with art and 24/7 I was the I mean you guys all they'll be fairly well from the podcasts like, I'm the kind of person who would wake up in the morning and be like, Wow, it's warm out getting the car, we're going to the zoo, screw the dishes, you know, like we went every which way. And before I understood these antibodies, I used to think, did I not wash something? Well, did I take her to the wrong place? What if I just wouldn't have gone here? Was it a ball pit that gave her diabetes? Like, before I understood that, in all likelihood, Arden was getting diabetes, you know, whether it was going to be when she was two, or three or four or whatever. It was definitely happening. You know, I don't think that we could have locked Arden in a bubble. And you know what I mean? Like, I don't understand the point of that, right? Like, at some point, let's say that would be true. Let's say that if I, by the way, you're gonna have to be really old for this one. But John Travolta was in a movie called The Boy in the bubble. And

Jennifer Smith, CDE 20:52
I was gonna mention that, like, nobody's gonna know what we're talking about some

Scott Benner 20:55
matter, I'm saying it, okay. It was a TV movie of the week in the 70s. I know, you don't know what a TV movie of the week is, if you're under a certain age, I don't care. John Travolta lived in a bubble. The only way he wasn't gonna die, because the outside world was just gonna, like his body couldn't handle it. You know, eventually he left that bubble, he didn't care. So if my point is that if you've got these auto antibodies, and you're gonna end up with type one diabetes, you're gonna end up with type one diabetes, and you're gonna live with diabetes, because that's, that's the straw you drew, you know, so you can't feel bad about it. I know, it's gonna happen and people are gonna feel guilty, but it's these antibodies fault, not yours.

Jennifer Smith, CDE 21:35
Right. And it's how your body interacts with them, right? Whether your body uses them the way that they're supposed to, to identify truly foreign pieces, objects, you know, viruses in the body. That's their job. That's you want them to be there. That's a really important thing. But sometimes they don't do the right thing.

Scott Benner 21:57
Friendly fire, Jenny. Yeah, right. There you go. Yeah. So oh, this was depressing.

Jennifer Smith, CDE 22:06
Nah, was informative. And I hope it's, I hope it was more, you know, I guess informative in a way. That's more, I guess, understandable.

Scott Benner 22:17
Yeah. No, I appreciate breaking it down. Because it's just like the other defining episodes really, you just make these assumptions that people know what Bolus means. And if they don't, they start forming other thoughts. And if you don't understand what these antibodies are, you could run around your whole life thinking you did something, or I could still think, why didn't I wash? Arden's hands one time, and she was a year old before I did something or I don't know what the hell?

Jennifer Smith, CDE 22:41
So I mean, I've gotten off of the whole, I've had people, I've had friends who who've asked me, Well, why do you think I'm like, I don't think anymore. I, I manage this. And I don't have time to go back and think because it's not going to make a difference. Right? Right. I mean, if it made a difference, in fact, of like proving what happened, and then I could actually move into like solving and having a cure. Awesome. But no,

Scott Benner 23:12
well think of it like this, really. I'll keep this vague, but my son is having a problem with another person. Okay, a person who holds sway over him. And he has, he's a bright kid and a thoughtful kid, and he's a thinker. And he will look at what's happening and break the problem down and say, maybe if I try this, this will allow me to you No, change this, to let this other person see that this isn't the case. Or maybe I can, maybe I can end around them and get around. And I've watched him for years, go over it and over and over and at times, make himself crazy about it. And just the other day, he said to me, there's no path. He's like, I'm not the only one impacting this situation. And no matter what I do, it's not right. It won't work. I have to just accept that this is the reality. And I'm going to go do something else now. And I when he was talking about that, I thought that is how I used to feel about diabetes. I used to think like, maybe I could think my way around it or, you know, at least to give myself comfort. And what I realized is that eventually is that the comfort is knowing that not everybody gets out of this unscathed. And people get things and my kids got an autoimmune problem. And she ended up with type one diabetes. And now we just we choose another path and go live happily on that one. So move on. Yeah, for sure. All right. Well, thank you very much. Yeah, absolutely. Have a good day.

Unknown Speaker 24:50
You too.

Scott Benner 25:00
I want to thank Jenny for being here. Don't forget that Jenny works at integrated diabetes.com. If you'd like to hire her, you can. I like to thank our sponsor today us Med, get your diabetes supplies easily, it doesn't need to be a big hassle. And with us med it won't be check them out and get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514. There are links to us, Matt and all the sponsors in the show notes of your podcast player and at juicebox podcast.com. And don't forget to go take that survey AT T one D exchange.org. Forward slash juicebox. When you support the sponsors, you're supporting the show. At this point, I don't even remember how many defined diabetes episodes there are. But there's got to be more than 40. If you're enjoying them, you can find them at juicebox podcast.com diabetes pro tip.com, or by joining the private Facebook group Juicebox Podcast type one diabetes, and then heading up to the top I want to call it the I always want to use the wrong word. And then I hold on a second I'll tell you what it's called when you get the sort of the Facebook page is a private group. It's really terrific. I think it's got like 24 25,000 members in it right now. And at the top. Not here this there's a feature tab. So you have to answer a couple of questions to get in. But once you're in there, go to that feature tab. And there's a list of all the defining diabetes episodes, all the variables, all the how we eats the Quickstart guides. If you're just starting with the show, the Pro Tip series is a list of popular requested episodes popularly requested episodes if I'm going to use English special episodes, Scott and Jenny's where they're called ask Scott and Jenny people send in questions and Jenny and I answer them a whole bunch of stuff on how to Bolus for fat and protein. I mean, there's a ton here anyway, it's all in that private Facebook group up under the featured tab. This is the part where I say thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Please subscribe and your apps Subscribe and follow follow and subscribe.

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#671 Type 1 in India

Preet's daughter has type 1 diabetes and lives in India.

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, and welcome to episode 671 of the Juicebox Podcast.

In this episode, I'm going to be speaking with Preet. Her daughter Nora was diagnosed with type one diabetes not too long ago, and they have an interesting living situation where sometimes Nora is with her grandparents for long periods of time while pre travels for business. This episode is going to give you a good look into what it's like to raise a child with type one diabetes in India. It's actually very interesting. You're gonna like it. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're looking for the diabetes pro tip episodes, they begin at episode 210 In your podcast player, or they can be found at diabetes pro tip.com, and juicebox podcast.com. As a matter of fact, if you join the private Facebook group Juicebox Podcast, type one diabetes, and go up to the top to the featured tab, there's lists of all the different series for you to look at. And use and keep for yourself if you like.

This episode of The Juicebox Podcast is sponsored by touched by type one, learn more about what they're doing at touched by type one.org, or on their Facebook, and Instagram pages. It's a great organization doing wonderful things for people living with type one diabetes, and they would just like it if you take a moment to find out more about them touched by type one.org. If you'd like to help people living with type one diabetes, and you're a US resident who has type one, or is the caregiver of someone with type one, you can help by taking the brief survey AT T one D exchange.org. Forward slash juicebox. Take you fewer than 10 minutes, it will support people with type one, it will support the podcast. It is very worth your time. I hope you're able to do it t one D exchange.org. Forward slash juicebox.

Preet 2:23
Hi, Scott, thank you so much for having me here. My name is Preet. I am a parent to type one diabetic daughter who was diagnosed last year in middle of COVID. And we are based in India.

Scott Benner 2:41
What's your daughter's name? are we sharing it today?

Preet 2:45
My daughter's name is Noor

Unknown Speaker 2:50
How old is she?

Preet 2:52
So she's seven right now. When she was diagnosed, she was six years old six.

Scott Benner 2:58
Any indication that something like this would be happening? Or did it come out of nowhere?

Preet 3:04
No, actually, so this was this is the first ever case in our family. Overall, we have we had no idea about this. But somehow we could observe some symptoms. So before she we actually thought there's something wrong with her. Since passed too fast. Two months, we could see her she not gaining weight turning skinnier, and she would go to pee frequently drink a lot of water. So she has she has not been someone who really likes to eat a lot. And she would just always be hungry. So that is when we realize that maybe something is not right with her. And we have a normal sugar testing kit at her home because my mom she recently got diagnosed with type two, because of her age and we had that kid so when we when we checked her fasting sugar in the morning, it was 269 and we had to contact her pediatrician and from there on it was like hospital visits admitted to hospital and all

Scott Benner 4:14
it's interesting of all the signs. Her hunger was the one that that kind of made you the most like Ooh, there's something wrong here because she just was never hungry prior to that.

Preet 4:26
Yeah, she was never a foodie. So she would just have basic food and that's it and this time, she would ask us to cook some specific things she would have these bad cravings and when she would eat them she would be like, Wow, this is so tasty yummy. And you know, she would start kissing hands off her grandma. I live with my parents. And she were like wow, you have you have made such a tasty food. So everything was a bit weird, but definitely she was turning skinnier. And she was paying a lot right Shiva started by doing bedwetting in the last few days, I say,

Scott Benner 5:03
Where were you in? Where were you when this happened in India?

Preet 5:08
Yeah. So that's I think that's a big part of this whole story. I was not in India at that time. So I traveled for work. And I was in the North American region at that time, and I was supposed to fly back in March last year. And suddenly, this whole COVID thing happened and all the flight, just flat flights got stopped totally. And I couldn't fly in. And at that time, it was like, okay, the situation is really bad. And it will improve in a month or so. So let me fly back. Let me come back then. And this sort of stretched till July. So she was diagnosed in July, and I sort of felt all of this then I used to spend time on video calls with her. So she would drink water, and then she would go to pee, she would eat in front of me. And that's why I asked my parents that there's something wrong with her. And it's not normal. And apparently, just a day before. And it was such a sheer coincidence. I was watching a documentary of Nick Jonas. And they're exactly they highlighted the symptoms after which he was diagnosed with type one. And I was like, this is exactly what Nora is going through. So I asked my parents to just check her sugar level when she wakes up in the morning next day, this all happened while I was sitting here, and totally helpless, totally restless, couldn't do anything.

Scott Benner 6:38
No kidding. For. So How long had you been away from her when you started realizing what was happening?

Preet 6:46
So I was away for her? Three, three to four months. And that is when we realized that something is wrong.

Scott Benner 6:56
Is that your average travel time for work? Or was this because of COVID? Specifically?

Preet 7:01
Yeah, this happened specifically because of COVID. Otherwise, I'm maximum traveling for two months. And then going back to her

Scott Benner 7:09
does? Did she have COVID? Or Did anyone in the family have it?

Preet 7:15
So that's the thing, so no, to my, my parents were overly cautious because they both are old. And then they had a child to manage all by themselves. So they were very cautious and they didn't contract COVID either of them from from what we know, you know, we never know that we must have and we might have, but after she got detected and you know, in India, when recently when there was second strain, and everyone was dying, that is when everyone in my family contracted COVID.

Scott Benner 7:47
Okay. Your parents have had it since then. or No. COVID Yeah. COVID like in the second kind of wave did they have? Oh, yeah.

Preet 7:59
Yeah. So in second wave, Scott, it. It has been so bad that every Indian they have lost someone who is really close, not someone, many people. So we were literally people were dying. And in middle of that, I came to know that even my parents, my daughter, all of them have been tested positive. So it was very stressful. And again, I was not with them. Yeah,

Scott Benner 8:22
I'm sorry. Are vaccines available there at this point?

Preet 8:28
So yeah, so for COVID My father got fully vaccinated. And my mom, so when they got COVID, they were not vaccinated at that time. But afterwards, my mom and my family, yeah, they all got the vaccine.

Scott Benner 8:50
Wow, that's, that's it must be insanely scary. I mean, I remember the news stories from that moment out of India were horrifying. My daughter has a close friend who has family in India. And that's all they talked about for quite some time. And then on top of that, you're not there.

Preet 9:11
Yeah, it was horrifying. So. So what happened was when she got detected, at that time, we had some evacuation flights from India being sent here. And I tried to jump on the earliest one, but still, I had to wrap things here and the flight which I got was two weeks later. And I went back and but unfortunately, I had to quarantine in a hotel facility there. I couldn't be with my daughter. And she had just got discharged from ICU. She was just out of the hospital and only my parents looking after them in middle of COVID being admitted in the hospital. That was really scary. And I tried to so they had some exemption that you can quarantine at home if there is some emergency but the officials there, they just couldn't understand that type one was serious. And they just considered it like a basic diabetes. And I was just making an excuse to skip the quarantine. But all I wanted was to be in front of my daughter. She just wanted to see me because she was going through all of that. And yeah, she had just been she had been really brave, but she still wanted to see me. That's a natural instinct of a child. No, of

Scott Benner 10:26
course. How did she tolerate COVID? How long did it take it to clear? And what were the impacts were?

Preet 10:32
Yeah, so luckily enough. First of all, I think I was really horrified that she got COVID. Because from what we were hearing, that these people who have any kind of weaker condition, they are hit really hard hit really bad. But somehow it was just like a basic flu for her. And we were still waiting, but but her pediatrician was quick enough to start the right antibiotics and the supplements for her immediately even before we could get the test results back. But yeah, luckily, it was just like a basic clip.

Scott Benner 11:17
What were they using at that time? When you when like, what did they give her?

Preet 11:23
Oh, I don't remember that. Those and biotechs on top of my head. Sorry.

Scott Benner 11:30
No, don't be sorry. That's interested and your parents are okay, as well. Oh,

Preet 11:34
yeah. So, yeah, they are okay. Now my mom has become really weak after this whole thing. She had the biggest and deepest impact. But yeah, the every Darrell Okay, now.

Scott Benner 11:48
Wow, that's okay. That's a big year.

Preet 11:52
That's a big year. And then in middle of that I went there. I took over so my parents were caring. So my father is the primary care for her along with me. So it makes sense I travel. So they started with a proper injection, or giving her insulin, the doctor trained my father. And then they started understanding at that age on how to manage it. And what happens in India, or maybe similar countries, we were never sent to a workshop or an education session. We were just discharged with a chart. If this was the sugar. This is what you have to give. If this was this reading. This is what you have to give without a CGM. And fingerpicking all the time. And it was a nightmare to be honest, it. I can't even imagine how bad it was. My parents couldn't sleep for weeks.

Scott Benner 12:51
Yeah, yeah. So what kind of insulin did they give her?

Preet 12:55
Okay, so since she's on MD eyes, we take two insulin. So the one which is the Basal is basaglar. And fast acting is fast.

Scott Benner 13:07
Okay. Oh, great. And, and so they just send you home with the insulin do you get? You get a meter I imagined, but is there much else after that?

Preet 13:17
No. So there is just this chart. And they will just send you that if this is the reading, just check three times a day. And if this is the reading, this is what you do. And after that it's all catch up game my parents trying to call Doctor all the time. Sometimes the doctor would answer sometimes the doctor is busy at night. She's studying 300. But they have already given what they were supposed to give. Now they have no idea what to do doctor won't pick up the call. It was really, really bad.

Scott Benner 13:46
Yeah, the I know, I actually know from the podcast, because the people contacting me that Indian food can be really difficult to Bolus for as well. So on top of all that classic foods that you're eating every day are are not easy is that you're finding as well.

Preet 14:04
So basically, when she was admitted in the hospital, she was served like a proper Indian meal. So we couldn't we couldn't see any difference that since she has been diagnosed her diet has been changed. So what the first thing which doctor told us before discharging her voice, just make sure you are giving her sufficient food. Don't try to change her diet. We have to manage it with what she had. I mean, what what is our regular food? But yes, it is it is difficult to decide the right doors with Indian meals. But since now it has been some time a while we have sort of figured it out. And again, my daughter since she is not a foodie foodie, she has a very good portion control. So if it's portion control, it still it's still better.

Scott Benner 14:59
Okay, that's That's great. And so her her eating habits went back to where they were before her diagnosis.

Preet 15:06
Okay, so yeah with normal food attends but since she like, like a crazy person who has never eaten in days if she gets street food and those kinds of things burger and all she would just eat like so initially she didn't crave with all these things so we had not been even going a lot to McDonald's and because she stays with my parents, right so my parents do not eat all of that. So her eating habits were very healthy, home cooked fresh food. And now since she diagnosed this, she craves to eat these things more but with the normal food her her diet is normal back to what it was before

Scott Benner 15:43
you guys aren't vegetarians.

Preet 15:45
No, we are not vegetarians, but we in India generally non vegetarians do not cook non vegetarian every day. So it's like once but now since she has been diagnosed what we have found out making a chicken curry doesn't spike her so a chicken curry with the normal, you know roti, which is which you call as non bread of a throaty, doesn't spike her and we can Bolus her well.

Scott Benner 16:12
So you've learned a lot in a short amount of time to see you. You have more technology now than what they started with.

Take a moment to go to touched by type one.org To see what they're all about. Simply speaking, their mission is to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive. They have wonderful programs and services for people with type one. And they put on an amazing conference, which is going to be back this year. And I'm going to speak at it. Check them out at touched by type one.org. I don't think you can get tickets to the conference yet, but it's coming. Check out their programs tabs, find out about their awareness campaign there Bofur cause their dance program dancing for diabetes, the D box they just put on a beautiful golf outing. And of course that annual conference is coming up sometime this summer in 2022. I'm going to be doing the talky talking again, take that COVID I'm getting on a plane touched by type one.org. You can also find them on Facebook, and Instagram. I'd also like to remind you to go to T one D exchange.org. Forward slash juice box join the registry fill out the survey, the whole thing takes fewer than 10 minutes, you'll be doing a great service for people with type one diabetes, and you'll be supporting the Juicebox Podcast, it really only does take a few minutes. The questions are incredibly easy. The whole thing is HIPAA compliant. It's absolutely anonymous. And it may lead to opportunities for you to do other things. If you want other things, you know, in the world of let me think of an example know somebody from the podcast once got to be in a trial for Dexcom adhesives, they Versa thing they got paid for. That could happen to you. You never know he won the exchange.org forward slash juicebox. And if you don't want to do other stuff you don't have to doing the survey is doing a lot. A couple last things. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. And if you're listening to the show, when a podcast app, please follow and subscribe. Apple podcast app asks you to follow I think in other apps, they may say subscribe, but whether it's follow or subscribe, please do that in the app you're listening in. It helps the show a great deal. And if you're not listening in an app, it's how the kids do it. If you need apps, they should be free. And you can find a bunch of them at the top of juicebox podcast.com If you're having trouble locating them if you're listening on line or something like that, but you should be able to listen to Apple Music, Spotify, all kinds of places anywhere you get audio. Alright, we're gonna get back to Preet. Now. Thanks for listening to all of this little chit chat and for supporting the sponsors. There are links in the shownotes of your podcast player and links at juicebox podcast.com. To touch by type one and all the sponsors

Preet 19:29
Okay, yeah, so that's, that's yeah. So that that's the part of the progression. So we were discharged with these injection needles, and then fee has been basically our bottles. And my mom real my mom just remembered that she said my mom, she has been a teacher throughout her life. At that time, she was not working because of COVID but she remembered she recalled she had one of her colleagues who used to talk about her Her son having type one, and she immediately contacted with her. And to be honest, Scott, she has been our Savior. During that time when we were totally clueless on what we have been thrown into and just a chart and doctor not picking up your call. And she asked us to switch to MDI, first of all, then the normal needle, seven injection, and the switch to the MDI. And then we could call her day or night and she was like, I was in the same situation when my son got diagnosed, just call me any time, so we would call her at 3am. At night, we would call her at four, five, she would call back to check. And she was the one who was guiding us through through this.

Scott Benner 20:49
That's excellent. That's really lucky, actually, to find somebody like that. We were

Preet 20:53
absolutely lucky. She was a godsend. And even till today, we can't thank her enough for that. I'm sorry,

Scott Benner 21:03
this is your hotel on fire.

Preet 21:13
No idea to do it today.

Scott Benner 21:16
Don't worry about oh, my gosh, kind of funny. I haven't had one of these before. You know, I was just looking during that little break. And India is for downloads for the podcast in that region of the world. India has more downloads than any other country. Oh my gosh, really? Yeah. In that in that region, like in China. Saudi Arabia, Saudi Arabia is pretty close to India. But in all that Turkey, Iran all that place where people still listen to the show, oddly, Thailand. But India's Got the most downloads of all those places. So yeah, yeah, I

Preet 21:59
think it's also because of the bandwidth. So I download all your podcasts when I'm connected to my Wi Fi. And when I used to walk, or run, I used to just listen to them,

Scott Benner 22:11
or you're taking credit for most of them. You're saying there's more than you think.

Preet 22:16
I'm so glad because I had been promoting them. So how I got introduced to the podcast, I had no idea, anything like that existed. And I was just looking for to join any Facebook group feeling totally helpless to do and then I came across this diabetes support in their group. I joined that and someone in the comments mentioned about this podcast. Oh, wow. That's I just immediately jumped on. And then from there, it was like back to back listening to the podcast, and we could figure it out a lot. And you know how to be bold with insulin has really helped us with Indian diet and a growing child, to be honest, that has been a savior for us.

Scott Benner 22:58
It's it's amazing to me, I mean, just as I'm sitting here looking at this map, and I can kind of run my run my mouse over, you know, every individual country to see the downloads in places I just never imagined anybody would ever find out about it. It's yeah.

Preet 23:17
I mean, when I started listening to your podcast to talk about sand CGM sand Dexcom. And I used to feel like an alien that, you know, I'm living in a primitive world. And we have a world which has totally moved on. And we are not using any of that for our kids.

Scott Benner 23:41
Please, hold on one second since the alarm went off last time your voice modulated weird through the microphone. I want to see if Jews just stopping talking for a second. We'll bring it back. So it did. So you're saying you don't. So what technology do you have right now?

Preet 23:58
So what happened was that then I started listening to your podcast.

Scott Benner 24:04
Oh, that's so funny. We can hold on a second. Let it wait. It's nice. Nine o'clock

Preet 24:20
in the morning. Maybe they can I had no idea that it didn't do that before suddenly to decide to do it. You

Scott Benner 24:24
would think the middle of the day would be a better time but whatever. Yeah. Yeah, go ahead, please.

Preet 24:31
Yeah, so what I was saying was that when I used to hear and listen to you, CGM, talking about pumps used to talk a lot but Dexcom and I had no idea what is just XCOM. I started reading about it. And then I realized that the CGM is a continuous glucose monitoring device and which can make our lives really easier because I used to I used to be so anxious with Nora that I would just pick her literally sometimes every hour. She's playing. And so before that, I just want to highlight one thing. So what happened? Within a week when she got discharged, she started honeymooning, she went into her honeymoon period. And we had this doctor who had given a chart, that very high insulin doses, and then she would start getting low. And that is when we realized and that our friend told us, that being more is at worse risk than the high. And just don't let her do that. Sorry, no

Scott Benner 26:00
wonder you're fine. So So you started thinking, Okay, well, if we're gonna, if we're going to pick one, we're going to pick higher than lower.

Preet 26:09
Yeah, so one thing was doctor said that as soon as she hits 90, or 80, just mix, so we have something called commercial glucose powder, which comes in the market. So just keep that mix it in water and give her three tablespoons of that anytime she had stat. So what I used to see was when I landed, I found that as soon as she would be ad, my birth parents will just panic, as if she was going to faint, and they would make so much of glucose and give her and she will go really high. Yeah. It was a very bad panic situation that her brain is not receiving signals. That's what they used to say. And she's going to get an and they was they were really scared. Yeah. And so what happened was, so she went honeymooning. And as a result, I had to pick her multiple times, because she would just easily touch 50 In an hour. It was really bad. It was a nightmare. And she was a very active kid. We have just given her something while playing and she is totally asymptomatic when she is low. She has no idea she has gone low and I would be sitting there while she's playing Call her wash her hands precut. So that was a routine and whole night also, we used to do like that just because she had started honeymooning.

Scott Benner 27:42
How old are your parents.

Preet 27:44
So my parents are around 65 and 70. And they had been doing all this like going back and forth ICU staying with her getting trained on this and managing all this all by themselves and learning all this all by themselves and then reaching out to people to understand how to manage it. And then when I landed, I just I just tried to understand this better so that we can make our lives easier because it was not at all sustainable. It was so stressful for all of us. And then I came across your podcast, and I came across CGM. Now, apparently, by that time, we were part of an NGO who were providing some education and some education around type one diabetes. So we were part of that Whatsapp group. Again, they were not the educators were not very easily accessible. But in the group, you could get some suggestion. So when I asked about CGM with the parents whose code whose kids were already diagnosis few years, the educators had their kids who had been diagnosed in 16 years. None of them recommended me to use a CGM. They were anti technology that something which is always touching your skin, it is not good. Many things and at that time, we just have one version of FreeStyle Libre, which was a beta reader and it would just show us graphs. Right. And we didn't have that the Flash version in which I could get the images reading at the same time. And whomever I asked they all were saying that this can lead to infection this can do that this can do that. But I took a decision after listening to the podcast that you know what everyone there is using this and if this is available, I will give it a shot even if I have to throw it later on. I really want to try this and luckily in November so she was diagnosed in end of July and then November they launched the latest I mean the upgraded version of FreeStyle Libre which came with the reader and I could get the real time reading and I just said I wanted this. So we just went and we purchased this now. Now, now, I realize that the reason people are not very open to adopting technology there because there is no concept of medical insurance which covers everything for the people in India, so nothing is covered. No insulin cost is covered. No, CGM is covered pump is of course not covered. So, everything we are paying out of pocket and everyone cannot afford it. So, just to give you an example, and I tried to convert it in USD for you, and the listeners is that I'm we are spending close to 132 USD every month just for the CGM.

Scott Benner 31:07
Okay. Alright, and $32 is $132

Preet 31:10
US dollars. Yeah.

Scott Benner 31:13
Can you give some perspective on what percentage of someone's income on average would that be?

Preet 31:23
Okay, so, so this is close to 10,000 Indian rupees. Okay. And in India, generally, an average household income is close to 15,000 a month. Yeah, a month. And this is 10,000 a month, which we have to spend. Yeah. And even if you're earning close to 30,000, people don't prefer spending money on this. Because just to monitor it. Real time, so even people who are earning a bit, okay, I've seen them going on holidays and spending money but not spending on this. So there is a huge cost and pricing concern. And that has I think made them anti technology. Yeah,

Scott Benner 32:17
I think they're anti spending money, more than anything. Maybe that also some of those, some of those excuses might be because they they're maybe trying to feel better about their decision not to buy it. I would

Preet 32:30
everyone be motivated me, or they talked about skin infection. They talked about something always inside my daughter's body. So no one encouraged encouraged me to be honest, other than the podcast. So I just listened to podcast. And you know, it was so funny. And it's really hilarious. So when you talk about, so I didn't know that there were multiple vendors and in the CGM market, and I would always see that there is this. I mean, in India, we are seeing this round, how come it's a different shape in us. And I would always see why are the type one varying something which is offered different shape, then I realized that that was Dexcom, which is a different shape. And we have a FreeStyle Libre. So not just that. So we had so we started using FreeStyle Libre. And that was a game changer for us. I bet all together a game changer.

Scott Benner 33:33
Pretty soon the Dexcom seven will be out and it it's gonna have a much different shape. We'll be flatter and sort around, like I forget if it's maybe like the size of a quarter, or something much smaller. So the next version is going to look different again. That's really astonishing. You guys can't get Dexcom in India, right?

Preet 33:54
We can't get Dexcom even even we do not have the advanced versions of freestyle. So what happened recently, I ordered a device called meow meow, which can be attached to FreeStyle Libre to make it a glucose information transmitter.

Scott Benner 34:11
Oh, wow. It's like a third party thing. It's not it's a third party

Preet 34:15
thing and it is around 200 USD, I had to get it imported from Europe and there was an AQL and import duty cost and that's another problem with all these devices is there is no subsidy from the government. Nothing is manufactured in India and we have to pay for all of this in the full price of what it is manufactured and sold in other developed countries and then on the phone. I guided and train my father how to activate it. And then we attached it because right now when so now, my daughter she has become a bit independent she takes her small bag with all her supplies, her glucose tablets are read on mobile phone while she's playing in the neighborhood. So my parents, they had to go all the time they used they used to feel so anxious. And now they just call her and she's trained enough, she knows that if she's the slower, she will eat the she will have one tablet, if she is this low, she has to come home. So she is very smart that way. But now that this device at home itself, they will come to know what is she going through and how our sugar levels

Scott Benner 35:29
amazing Good for her. That's really great. And and your parents need some sort of a break. They can't be, especially when you're older. You can't be that nervous and anxious constantly. It's just not

Preet 35:40
obviously I'm I can I mean, I just cannot imagine what they had been going through. And they're they're still because still she's on MDI. So the idea was, the second level of grade was to switch her to insulin pump. So the only insulin pump which we have in India is maytronics. And that is close to 5000 USD, which is equivalent to a car cost in India. Wow. And because of the pandemic, because we need special training for all of that, we couldn't get it immediately. And so that's my plan that once I'm there, I'll switch her to Pam. And I think that will make our lives even more easier from what I hear from the podcast, especially if you have a growing child with growing needs.

Scott Benner 36:29
How? How much of your willingness to take risks like this are big do you think because you traveled to North America? Do other people not get out of India as frequently as you do? Like, yeah, so

Preet 36:44
my job in terms of traveling and consulting is about differential. First of all, I'm a single parent. So my situation is a bit different. I live with my parents, maybe if they're there is a couple one person is not traveling that much than the other person. And it was not just North America, I used to travel globally. And my child was totally healthy. We had everything sorted out her school was nearby, there was never a problem as such, it's this whole this whole pandemic situation with her beating getting diagnosed. We have to I have to reset everything and reset my priorities and what I really have to do and how I should be doing. Yeah, so I'm still thinking and contemplating on on how to make it work.

Scott Benner 37:33
That's really impressive. A lot of people get faced with the same thing you have, and it's hard for them to, to, you know, read, re order their priorities and make decisions. I just did the online just to have like some concept of the money you were talking about a second ago. And you said that a pump is equivalent to a car cost. And you said, you know, 5000 US dollars? It's 376,000 Indian rupees. That's

Preet 38:03
yeah, so we call it three lakhs of 70,000. So it's that much yes, in Indian rupees. And that's the cost of pump plus the recurring cost of the patches. So only very rich and elite people. They use a bomb in India,

Scott Benner 38:21
our cars in free, or cars, not something everyone has as well.

Preet 38:26
No, everyone doesn't have a car.

Scott Benner 38:29
Okay. Wow. That's amazing. I, it's just very interesting to hear the same story from a different location, dude. I mean, like, because your story is the same as everyone else's about Yeah, about being diagnosed and the fear and concern and the learning curve and all that stuff. But then you add these different impactors. And it just seems so much. Yeah,

Preet 38:54
I mean, it just makes it worse, you know, so it was not just so so our journey was so every type one family, they have a type one story and a type one journey, which I think just carries on right. But it was for us, it was not just mentally accepting it. It was about dealing with all this and we are still doing that. So for example, majority of schools do not have a medical room, they do not have a nurse, the moment they'll come to note that the child is a type one, they won't admit your child or they would make you sign an undertaking. If something happens to the child. It's not their responsibility. People don't know about type one. So they often ask or in publicly event teachers they are not trained and they would say why you didn't do exercise properly. Why did you do eat so much of sweet? That is why you got type one and then the diabetes, the diabetics, the diabetes educators, I don't know somehow The doctors do not like to work with them. So there was when we got discharged, if the doctor didn't have time, they could have easily recommended us, like they were these NGOs, who offer education and connect us to someone, they don't do that. So these NGOs, they work undercover, they do not work publicly, you know, so that the doctors, they do not buy caught them altogether. And then we have these insurance companies, which are not covering us, then we have government applying a lot of import tax on all of this, nothing locally manufactured, I mean, I can't even tell you like fiasco, it's an international insulin, and we are paying a lot for that. And that's why people, they don't give full quantity of insulin as well, those who cannot afford that much of money. So there are a lot more struggles than just me thinking about how best I can manage nor there are a lot more things which we have to constantly think and struggle and that makes it really worse

Scott Benner 41:05
course. Do you have interesting, you may have absolutely none. But do you ever consider leaving India moving your family? Would your job allow that or is your job based in India?

Preet 41:18
Okay, so, um, I have been traveling. So before that, I was so when moved was a baby, I was in UK with Nora. And since I was single, and it required travel, I just thought it was intentional for me to be with my parents and be there and things were really good, because if you have some help from your own people, I have my sister and brother in law, by the way, also in India, who are married and they they all they are within India, but not in locally to us in India. So they are also have good extreme health when we want. So I had a better support system. And that is why I did make all of that decision. Now, like I said that, first of all, I was not prepared for this pandemic. Second, I was not prepared for news condition. Now, I have to reset everything, I have to consider a lot of things. And what I feel is, let me not make a decision in hurry immediately just because the situation is not as it was supposed to be, and maybe it will get better. But when I come to these countries, and I see insurances fully covering everything, to be honest, now that she is type one, I feel living as a single parent with daughter in such countries will be much better.

Scott Benner 42:42
No, I I imagined you might be thinking about that. And to be honest, I I know it's a hopeful idea that you could go find a better situation. But I also find it sad that you'd have to leave your home and your family just because yeah, these things are available in other places. That's

Preet 43:01
exactly. So it's about what to choose, shall I choose a better environment where Nora is always busy with her loved ones? Or shall I choose somewhere where I'm not taking? They're not worrying about the expenses or any other thing? But then she doesn't have all of them? So yeah, what is better for her and me that is something which I have to decide.

Scott Benner 43:26
That would be a big decision either way. I was researching a little bit before you came on and about the prevalence of type two diabetes in India, when you mentioned that your mom had it. It's much more common in urban populations than it is in Indian rural populations. But how is it managed? Because if there's such a misunderstanding of type one, the way you described, I wonder, I wonder how they like How was your mother managing? What do they tell her to do?

Preet 43:57
Yeah, so luckily, her is not really bad, because so she just takes one pill every day. And she's way under control. So much. Yeah, in India these days, older people getting tired. Type Two is very common within the urban population primarily because of high stress levels. And she walks regularly and it's very easy. You know how easy it is to manage type two, but they often confuse type one also with type two. That that's the thing. So my for my for my mother managing is really easy, because it's not really bad. We diagnosed it quite early and with lifestyle changes. It's all under control. Gotcha. Yeah, it was. It was only during when she was in ICU with Nora and they were going through all this stress, it became worse. And during COVID Also when she had COVID Her sugar levels

Scott Benner 44:56
that she hasn't changed her. There's no real way for her to change her. diet, your mother is that right?

Preet 45:02
So just to let you know that if the basic Indian diet is very healthy if you eat it balanced, so there is a bowl of lentil curry, which is protein, then we have a mixture of vegetables that makes half of your plate, then we have yogurt, then we have a lot of salad. And then the main content would be roti, which is like pure carbs. And if you just eat like one or two, it's the Indian meal is very healthy. And it is so if it's all about portion control, and so we don't make any diet changes for sure. And we manage it with that because we will anyways not into heavy eating, eating fried food that is not regular Indian meal. So my parents used to always eat very healthy freshly cooked meal and sordid mode all the time.

Scott Benner 45:58
Gotcha. Oh, that's excellent. Oh, good. That's, I'm enjoying learning about this. My My only understanding of India is through my, my my my daughter's friend who just comes home once a year and she says MR. BENNER, I fit in the hole this week. And that's, that's pretty much my whole my whole. She She always talks about going home to her her grandparents. And okay, and she's like, I had to go to the bathroom in a hole. And I'm like, oh, like, Okay. And so I have no, like, I can't picture your living condition. I can't picture your cities, like in my mind to Kelly, my wife has been once to for work, but like, I just don't I don't have enough of and I imagine a lot of people listening don't have a lot of context for it as well.

Preet 46:43
Yeah, yeah, no, no. It's pretty modernized. In terms of the lifestyle and the way we live. But when we have to deal generally beyond just the lifestyle and living, then there are a lot of gaps, which are the ones which are highlighted to you.

Scott Benner 47:00
Yeah. And there's a is there a fairly big disparity in education as well? Like, is it is it a very half and half not society? Like, do you are you either doing well, or you're not? Is there no, like middle class? Or is that no, no,

Preet 47:15
actually, in India, the majority is middle class. Class is the biggest okay. So they are the high taxpaying class. So that is the biggest class in India,

Scott Benner 47:27
I say, I say, what kind of work is available for people, and there's no medical insurance available through jobs or through government? Is that right?

Preet 47:38
Yeah. So there is a basic medical insurance, but that's more for those who are poor, there is a public health system, but people end up going to private hospital more, because the public health system is not very good. So they have something in place, which is generally used by people who are poor, because the facilities are not that great.

Scott Benner 48:02
I say, okay, so So the government has something in place, generally used by the poor class, and then people who can afford it go to private institutions and private hospitals, things like that. That's correct. Yeah. Yeah. But you're always paying for your medications. In counties

Preet 48:19
these days, it's the medical insurance there only covers the hospitalization charge if it is more than 24 hours.

Scott Benner 48:26
Okay. All right. Yeah. Interesting. That is

Preet 48:30
what medical insurance means there. And there's

Scott Benner 48:33
no private insurance, like there's nothing that you could buy on top of all this to help you.

Preet 48:40
So all this medical insurance is a private medical insurance plus or a corporate medical insurance. So it's not a government medical insurance I'm talking about so we have to take and I'm paying a premium for that. And then if you need to there is there are a few companies who have come with a type plan in which they would only cover the hospitalization because the medical insurance they would wouldn't even cover hospitalization for pre existing conditions if slot for a type one patient. But again, they don't cover everything and everything is like a private everything is private insurance, then there's government insurance is generally used for those who are

Scott Benner 49:19
poor. I see. What what do people people who can't afford insulin? Do they just do they just the eyes like what is the what happens to them?

Preet 49:33
Sorry, sorry, what's the question

Scott Benner 49:34
when when someone just can't afford insulin? What path is there for them to?

Preet 49:40
Oh, yes. So yes, so they do insulin rationing? First of all, many of them don't even so if you're talking about really poor people. I don't type and I've never seen an urban population. I'm not really sure. Why is that um, So they will. So the moment it gets diagnosed, they do insulin rationing, so that that means their lifespan reduces because their sugars are not well under control. But we do not have a lot of research and study on the lifespan of Indians with type one diabetes. We recently had a report published with a sample of 40 people. And I think those people managed it well, that is why they could live so long. They still do not have any data for those who cannot manage it. Well, all I know is they do insulin rationing. They rely on NGOs, they rely on public health system to get some subsidized insulin and things like that. So I really feel like doing something and working towards that, that at least every child now, since we started using CGM, I started feeling it was so cruel of me talking and fingerpicking node all the time, I used to feel so bad her fingers used to get swollen by the end of the day. So many times we used to break and I wish I can provide a CGM for any child who is diagnosed. I know as we grow big, we have a better control and we can manage even with the picking and meds. I know Jenny does an MDI herself. So as we grow, we have a better control. But for kids, it is really and the parents, not having a CGM is is like, you know, walking in a dark room and having no idea what's going on.

Scott Benner 51:28
I understand what you're saying. Well, that's a it's a powerful feeling to know know how hard it is, and then be helped by it. And then look over and see all those other people who don't have that stuff. It's I know how overwhelming that can feel. Do you feel lucky? Do you feel guilty at all?

Preet 51:46
I feel lucky. First of all, it's just not that I could afford it. I could take a chance because everyone was saying this technology is really bad. So I'm, I'm really lucky that I could do it. I'm really lucky, I can afford it. But at the same time, I sort of feel it is my responsibility to educate people more about CGM in India, which I do a lot. But I really wish if I can sponsor it as well, for especially very young kids under five who get diagnosed. It's it's really it's really very harsh.

Scott Benner 52:21
How is Nora doing? Does she know anybody who has type one or she the only one?

Preet 52:27
Oh, so she didn't know anyone when she was Typhon. So what happened was no. You know, these young kids, they are so resilient, so brave. So when she was taken to the ICU, she was packing all her soft toys. So it was like a holiday in middle of pandemic for her. She had no idea what was going on. I couldn't I was here I was really scared on how should I even face her. She's an ICU, she there must be so many things attached to her and that I called her she was eating her meal because she was always very hungry. And she was saying, you know, Mom, this meal is just like a restaurant. It's so tasty. I love this place. And you don't worry. You don't have to come all the way I'm really fine. You don't have to come we have managing it well. And she would ask her grandparents to leave as well, that she would stay here by herself. So she has been really brave throughout. But what we realized is that this whole insulin and all that is a high profit making game for the medical companies, pharma pharma companies out there. So as soon as we got discharged, we started roost, my parents started receiving phones from all these agents who wanted to offer us fiasco and basaglar at different discount rates. Okay. And these phones were continuous. And then when we wanted to switch to MDI, I don't know how the agents came to know so many came home. And they were like, We don't have time. I mean, these people don't have empathy. Right? They they are just salespeople. Yeah. So what they did by the move was great, what they did they literally pinned down nor to teach my parents how to give them their the pinto down. So many people, they held her. She was screaming, leave me Leave me. And they just did it. And my parents were like, What the hell is happening. And after that, she really went in trauma for a few days. She had not seen anyone with type one. She had no idea why this was happening to her. But then, so every time we would give her MTI my parents had to struggle they had to hold her before that she were taking she was taking like a proper injection all the time and she was totally okay with that. And then we had to connect her to my mother's colleagues, son who would show see see nothing is happening but she would Don't listen to anyone. And then but so gradually she came out of the drawn line, it was very, very difficult for all of us. So I was not there and I was requesting begging them to at least let me quarantine at home. If he will see me I'm there, she'll start taking meds. But they just wouldn't understand the authorities there. So I would be on the video call. And then I started looking for YouTube videos and all that. And when I reached her, I started her showing that she is not alone. There are people out there who have see such a small girl has got such a small girl. Then gradually, yeah, she was over. And she was anyways very, very, very brave with this whole situation, just barring that little trauma period. And she in between, she used to ask that, why I have type fun why no one has type one. And then one day, I just I was checking few videos on iPad, and I saw her recording her own video, in which she's showing her CGM. And she's saying I have a superpower. And this is my superpower. And I am living on MD eyes and she just made a video of her own. And I was so inspired to see that amazing.

Scott Benner 56:17
That's really wonderful. She's resilient is a there's not enough of a word for her.

Preet 56:24
Yeah, I mean, we have been very lucky with her managing all this hate

Scott Benner 56:28
the between like the sales pressure and the being pinned down to get injections is a lack of compassion. Is that a cultural issue?

Preet 56:39
So I think there is a training issue. These salesmen are not trained to be compassionate they are they're not selling pens, or you know, any other electronic device they are selling, which is a medical gadget, something related to someone's condition, they don't have empathy at all. I think there is a huge training, training issue training gap. And then my mother complained about them to the area manager. He really apologized for it afterwards. But they there was a lot of pressure on the salespeople to meet their targets, I think. So it's lack of training, meeting targets. And yes, there is some cultural cause some culture as well, because if you see policy policy or the government officials, they are not they're also not trained enough to be more compassionate towards people

Scott Benner 57:33
and even just general understanding because you know, about a half an hour ago, you said that even doctor said like what did you do to her like you gave her Why did you give her so many sweets? How did she get this like that? That's a real misunderstanding of type one,

Preet 57:46
not the doctors, the teachers and normal people and doctors definitely understand. But yeah, but but the regular the teachers and the normal people. That's a very common question for no wrenches. She knows how to answer that.

Scott Benner 58:02
For her. She's really, really something else. And now she's just seven years old still and only been at this for a year.

Preet 58:08
Yeah, she has been seven year old. She has been out and she is managing she sometimes she's scared mama, what will happen when the school will reopen? I don't know how to do all this, then we tell her that don't worry, we'll be there with you. So she has something going at back of her mind. But now she's managing she knows what gives us gives her spike. So sometimes if she's eating something, she would say, Are you sure we have Bolus Jennifer this or shall I just stop eating now? So she's like that? And yeah, she she's she's managing it really well, at her level

Scott Benner 58:44
thinking about it at a higher level too. That's excellent. How long is the school been? Like? She's Are they are they going to school remotely? Because of COVID? Or?

Preet 58:54
Yeah, so how her school has been virtual since one year. And that continues for now. But if the situation improves, they will start reopening it. So we have no idea when they will open it. So right now she's on virtual schooling. And by the way, when she was in ICU, she used to attend all her classes from there as well. And she would educate everyone that I had been. We had no idea that she was listening to all the conversation we never told her. And then she would say, you know, ma'am, I'm an ICU. I've been detected with type one diabetes. And then she would show man I want to say some things. This is my CGM. This is how it works. She would keep everything with her. Just to educate everyone.

Scott Benner 59:41
It's great. That's really something she's really special. I I don't know my kids were six years old. I don't think they could have done that. That's

Preet 59:49
exciting. Suddenly, I don't feel I don't know. Suddenly she has become so mature for her age. I mean, I can feel so much of difference. She is understanding things on her own. She is no more that small baby you know before whom she was before just think that just playing playing playing not even eating properly

Scott Benner 1:00:08
right has she has her body responded to the insulin she's not thin any longer.

Preet 1:00:12
Yeah, so she's not cow she was before. Yeah, yeah, but she was overall she has been like her her own. I mean she's not a what you call it up? She doesn't have a lot of fat so she's quite athletic. But she's not skinny skinny how she was before?

Scott Benner 1:00:30
How does how does? How does management work for diabetes like here? Once you have type one you see an endocrinologist every three months, they start checking things like celiac and thyroid issues and is all that happening for her.

Preet 1:00:44
Yeah, so we are doing that now. Since everything is private. You have to pay for everything. It is not mandated. But we do for note many parents don't do it. We are regularly doing it for note every three months. Yes. And again. That is like that is expensive. But we are doing it.

Scott Benner 1:01:04
Do you know what he wants? He is

Preet 1:01:06
so recent even see was 6.1

Scott Benner 1:01:11
Wow, that's really great. It's amazing. Is she and she that's a combination of her. Your parents? Sometimes you do you help her win remotely with diabetes? Or do they handle it all locally? Like you're you're not home right now. For example? Yeah,

Preet 1:01:27
to be honest, it's all my dad. He is like he just makes sure she's not spiking or she's not going under all the time. I mean, it's teamwork with dad and me but I so whenever i i Keep on researching a lot. I listen to this podcast, and I do a lot of so whenever I learned something, I sort of educate them and then together we decide how they should be bolusing like when when they're eating something fried and how to Bolus for fat as well, which is in food. So those things I keep on educating and by the way, it has been one year and she's still honeymooning.

Scott Benner 1:02:01
Oh, still, yeah, yeah. What? How much Basal insulin does she get a day?

Preet 1:02:07
So her Basal insulin, I'm not sure. If I mentioned I'm telling it in the right unit, but she uses MDI, so her Basal unit is five units.

Scott Benner 1:02:18
Five units a day. Yeah, yeah. What does she wait, you know? Sorry. How much does she weigh?

Preet 1:02:24
Oh, yeah. So she is 23 kgs.

Scott Benner 1:02:29
I'm just doing my real quick. Okay, in pounds and pounds translate. It's about 50 pounds. 23 kilograms. Okay. And she's using five a day. So. So if she was on a pump, her Basal rate might be around point two. Yeah, yeah, she's she's definitely honeymooning still, huh.

Preet 1:02:49
Yeah. And the bonus, the bonus, which we give obviously depends on what she is eating. But for a normal diet. It's just two units of Yes.

Scott Benner 1:02:59
Okay. Yeah, she's used that a little bit still. That's a Well, that's good. It's nice for her to get a chance to. And your father? Is your father ready for the idea that when the honeymoon ends, the amount of insulin will increase?

Preet 1:03:13
Yeah, we all know that. And sometimes, maybe she has got some allergy or something. And suddenly, we have to give some more and we are like, Oh my God, it seems like this is ending. Honeymoon is ending. We all know that. This is going to end someday. But we really want this to continue and stretch for as much as it can't work

Scott Benner 1:03:32
out. Well for you right now. For certain. Yeah, no. any brothers or sisters for Nora?

Preet 1:03:38
No. She's She's my when are you tired? Okay.

Scott Benner 1:03:41
Wow. She's gonna Well, you know what, she's probably super, you know, responsible and mature because she's around older people most of the time, right? So she's Yeah, I think she's gonna be like a little 70 year old lady.

Preet 1:03:59
Exactly. She just talks like my mom and dad. So I'm like, I'm living with 370 year olds.

Scott Benner 1:04:08
It's amazing. That's very funny. Oh my gosh, so does she have I mean, I guess she's so young, really. But to talk about like, I Oh, my gosh, how much time has she actually spent may reframe my question. How much time has she actually spent in school before COVID hit and knocked her out? She must not live in been there for very long.

Preet 1:04:33
No, so she just finished her. I think three school and she was about to go to the proper school. And since then we have COVID

Scott Benner 1:04:44
Oh, she's never really gotten to do it at all. No, no, I see. Oh, that's terrible. Do you think there's any sign that they're going back or right now they're not talking about it.

Preet 1:04:54
So they have opened for senior classes I personally feel is since till the It is dangerous, there is no point in opening it for such young kids, because they have not even started rolling vaccination to kids who are 1111 and above and even this vast population who are who are still not vaccinated. So I personally feel that making them vulnerable especially with the strains, which are impacting kids more now should not be done at all till till this is gone. But then there is too much of pressure sometimes from from the parents also. But I So, what happened is they're still anticipating strain three specially after the festival time. So right now, it's festival season in India. And because people get together a lot during this time, and then there will be winters kicking in, they do anticipate a strange reason, at least not this year. But let us see, I really I'm not very comfortable sending her till till we have this thing in place, like getting really worse. And if majority of people are not vaccinated.

Scott Benner 1:06:02
Yeah. Well, that makes sense. And I'm assuming too, this causes a pretty big issue for childcare in general, because their parents were expecting their children to be at school, another home.

Preet 1:06:14
Yeah, I think that is the major problem and why they are pushing across countries, not just in India, to reopen the schools and send them especially as a childcare problem. But But yeah, I think it's so maybe now I'm a parent of type one. So I tend to everyone, I would have never known that this world existed, till node got diagnosed. And this has opened a different world. I have changed as a person, I think differently. So for me, no going to school and being exposed to COVID. All that probability does not make me comfortable.

Scott Benner 1:06:54
Well, Arden has a cold right now. It's not COVID. And I've been fighting with her blood sugar for two weeks. So she know she's 17

Preet 1:07:06
Oh, wow. Yeah, I don't know. I've never met her. But it feels like I know her forever. So I introduced Scott and Arden to Nora and my parents. And they were so happy to know that that there is a father who has dedicated everything just to look after her child. I mean, his child and my father was so inspired. And I think he's just trying to do that.

Scott Benner 1:07:34
That's wonderful. Thank you. I mean so much to me, I you making me feel like squishy inside.

Preet 1:07:43
didn't do that much. Just to take care of that child. I can. I can at least put her put her on CGM.

Scott Benner 1:07:53
Sounds like you guys are doing a really fantastic job. I mean, honestly, that's, I don't I can't see what else you could be doing right now. You know, you just seem like you're doing everything you could be.

Preet 1:08:04
Yeah, I mean, we saw when she got 6.1. My father was happy that I told you know that those people who are on pumps here, they get just a normal human sees, which is in fives like 5.25 5.3. And he was like, really, that means I need to work harder. I didn't work hard enough.

Scott Benner 1:08:22
Given your data job in his later years,

Preet 1:08:25
maybe we actually tried to figure this whole max of Indian food, the boilers, how to make it work with MDI, and the nose craving every weekend craving for something really homemade. But sweet.

Scott Benner 1:08:36
Yeah, that's really great. And you're in the you're in the private Facebook group for the podcast, right? Yeah, yeah. Do you find that helpful?

Preet 1:08:44
Yes, yes. So this these groups when parents discuss their issues, and then in the comments, actually, even the comments are very helpful on how different people are managing it. Those are really helpful.

Scott Benner 1:08:56
Good, good. I'm glad. That's excellent. Well, I really appreciate you coming on and doing this with me. Is there anything that we haven't talked about that you wanted to?

Preet 1:09:05
Oh, gosh, there are so many things, which are never ending with such situations such a diagnose, but I think we have covered too, I really wanted to highlight how things are in countries like India. So it's not just accepting your child has this condition, you have to fight socially, culturally, monetarily. There are many aspects to it. And I think which everyone deserves to know is one thing, which I just fail to understand, Scott, as we all have been advocating insulin for all. And countries like us, all those who are very high on human rights, who talk a lot about human rights. Despite knowing all this, How can everyone be so blindfolded and not make a difference. I mean, I just feel to understand that

Scott Benner 1:10:03
you so why is it not something that people fight about more of the price of insulin?

Preet 1:10:08
No. Why is it not why the price of insulin is still so expensive and why it is not like a regular basic drug available globally worldwide right

Scott Benner 1:10:17
now I am actually, I just scheduled an interview with a gentleman who's trying to bring a law, a federal law to vote about that exact same thing. And I haven't spoken to him yet. I think he's going to be on in about two weeks. So I'm hoping to find out what he's doing. It is really something I think what happens is, is that for a lot of people they have in America, they have private health care insurance. And so the price of insulin to them isn't very great. And so there's, so you have this big path of people, this big swath of people who aren't impacted by the price of insulin, and therefore, it's not a fight that they, I assume that they feel needs to be fought, and they don't see how it impacts the people who don't have that insurance.

Preet 1:11:05
But, but but my thought is why to even fight for it. This is a hormone which is generated inside the body, which is available outside, why don't why doesn't who, who and all these work with these pharmacies, we know these are the pharma companies and the insurance companies, just in few highly developed countries doing it, we know how to solve it, you know, just let it locally manufacture everywhere. Why to still make it like a high profit margin when we have other drugs? Which we can do that? I mean, I still don't understand why do we need to fight for it? That's the thing I just don't understand. I

Scott Benner 1:11:44
agree. That's a would seem like an obvious statement is I mean, yeah, seems like obvious. Yeah. But you asked and answered it in the same pot is people are making money off it. And it's easy to say the pharma companies are making money off it. But there's also in America pharma, pharmacy benefit managers, which are basically like middlemen that make money. I mean, you're talking to UFC salespeople who are trying to push it over there, because they, you know, that person gets a little piece of that money, the company gets a little everybody's getting, everybody has their hand in the, in the pot, taking some out. And you're, you're gonna have to get to a point where, like you said, like, some larger entity steps in. And that's something but I think these incidents are also covered by, you know, patents, you can't just start making it on your own, you'd have

Preet 1:12:32
to, I know that that's the thing. So like, in Canada, it's patent free, right? They, I mean, if Canada can do it, why can't other countries do it? It's just few countries who are impacting this, across the world, people are dying because of this. And we know the cause, like you mentioned all that. We know everything. I mean, why not make it obvious. And you would fly to in fight for it and just do it?

Scott Benner 1:12:56
And you would think to even like, specifically in India, there must be pharmaceutical companies there that could take this up. And I guess it's it's about, I guess, they'd have to be subsidized by the government, like, some people aren't going to just start making a thing if they're not going to get paid for it. So somebody has to step in and say, Look, we'll pay for it, and then we'll give it to people cheaper, like the government would need to do that.

Preet 1:13:19
Yeah, they'd have to be worth their taxes, or middlemen, for sure. I think it needs to be a coordinated effort. But at the first stance, maybe the the countries who are manufacturing this in bulk across, have an ERP and charging a very high patronage for that. I think, once we start from there, it will come down that that's what

Scott Benner 1:13:40
you're gonna have to find. There's going to have to be an entity that's large enough and strong enough and influential enough that has the nerve to just step forward and say, We're gonna fight for this now. And, and hopefully that could happen, but it does. It does seem like it does seem like something that is more of a dream than a reality. But you

Preet 1:14:01
know, yeah, I mean, for for me, in a country like India, educating on CGM where people cannot even afford insulin. So my first step is to make sure a good insulin like fi ASP is available at least. And they're using it in the right portion. They're dosing it right to begin with, even before touching the CGM. Right,

Scott Benner 1:14:23
I agree. Well, I prayed I really appreciate you doing this very much. This was a wonderful way to spend this hour so thank you very much.

Preet 1:14:31
Thank you so much, Scott. And keep on inspiring say my hi to Arden

Scott Benner 1:14:36
Oh, I thank you and and please tell Nora that the guy on the podcast says hello.

Preet 1:14:40
Oh, she will be so happy to say hi to Nora. I'll make her listen.

Scott Benner 1:14:44
Oh, that's excellent. I'm I want to say hi to your father and mother to like, I think what they're doing is really astonishingly brave. Especially

Preet 1:14:53
really good. I think I thought I was thinking was that you know if ever you want to interview a senior primary carer Like, who was about 60s? He can be

Scott Benner 1:15:02
the one he would know, huh? Okay. Thank you very much. Thank you so much, Scott. Have a nice day bye a huge thanks to Preet for coming on the show and sharing her story. I also want to thank touched by type one and remind you to go to touched by type one.org. And to find them on Instagram, and Facebook. Also find my private Facebook group Juicebox Podcast iPhone diabetes. Don't forget the diabetes pro tip episodes are available in Episode 220 where they begin or a diabetes pro tip.com and juicebox podcast.com T one D exchange.org. Forward slash juicebox. Take the survey support the sponsor support the show. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

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