Diabetes Education, Myth Busting and False Cures – Dia-Logue Podcast Episode 06

Pam Durant talks to Jazz Sethi who is a Certified Diabetes Educator, IDF Young Leader of Diabetes for South East Asia and the Founder and Director of The D1abesties Foundation. In this episode, Jazz highlights many important topics including the importance of access to diabetes education, and the harm that false cures, incorrect information and language can have for people living with diabetes.

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Jazz Sethi is the founder and director of The D1abesties Foundation – a global movement to make those with Type 1 Diabetes feel heard, understood, supported and celebrated – with a dedicated YouTube channel, monthly meet ups, awareness tours, education programs, advocacy drive and several other creative projects.

She was diagnosed with Type 1 Diabetes when she was 13 and currently is on Pump, CGM and DIY Loop. She is the IDF’s Young Leader of Diabetes for South East Asia for 2019–2022 term representing India. The D1abesties Foundation works closely with Diabetes India, RSSDI, and NHS England for developing projects and publications. Jazz is also a certified diabetes educator and did her training with the IDF program.

She is also a professional dancer, choreographer, theatre artist and a published author. She completed her training from Broadway Dance Center in New York and the AEF from Florence. Her mantra is simple: Live Happily and Bolus Regularly.

Episode 01: Diabetes Education, Myth Busting and False Cures

Pam  0:02 

Hello and welcome to Dia-Logue, the Diapoint podcast. I’m your host Pam Durant. Today on the podcast, I am so excited that I get to speak with Jazz Sethi. Jazz Sethi is the founder and director of the D1abesties Foundation. This is a global movement to make those with Type 1 Diabetes feel heard, understood, supported and celebrated. With a dedicated YouTube channel, monthly meetups awareness tours, education programmes and advocacy drive and several other very creative projects. She was diagnosed with Type 1 Diabetes when she was just 13 years old, and is currently on a pump CGM and DIY loop. She is the IDF Young Leader of Diabetes for Southeast Asia for 2019, the 22 term representing India.  The D1abesties Foundation works closely with Diabetes India, RSSDI and the NHS of England, for developing projects and publications. Jazz is also a certified diabetes educator and did her training with the IDF programme. She is also a professional dancer, choreographer, theatre artist and a published author. She completed her training from Broadway dance Centre in New York. And the AEF from Florence. Her mantra is simple. Live happily and bolus regularly. And I am so excited. I got to spend some time with her to learn more about her, the D1abesties Foundation and many of the other amazing things that she does.

Jazz, it is so great to have you here. Welcome to the show. Thank you for joining me today.

Jazz Sethi  1:42 

Thank you so much for the invite. And I’m super excited to have this conversation with you.

Pam  1:47 

Thank you. So before we dive in, there’s a lot to talk about, because you do so much and so much amazing work. And before we dive in, can we start with your diagnosis story? How old were you?

Jazz Sethi  2:00 

So I was 13 when I was diagnosed, and it was pretty similar to everyone’s diagnosis stories in terms of, you know, the symptoms that I was experiencing, I was, I lost like, about five kgs in a week. And we were sort of preparing for a football match. And there was a lot of practice for the soccer match. And that’s what I kept thinking that I’m losing weight and feeling thirsty because we’re doing so much practice. But then my mom sort of looked at me and how will mother’s look? And they’re like, no, something’s not right. And we called up our family doctor, and he asked to get a few tests. And the results went directly to my doctor, and he said just rushed her to the hospital immediately. So my blood sugar diagnosis was 1050. And I was immediately put out into the ICU and I was declared Type 1 diabetic.

Pam  2:49 

Wow. 1050. That’s a difficult diagnosis story. Yes, everyone always has high blood sugar. But I think that is the highest that I’ve ever heard. And especially that you were, you know, still moving around and that you hadn’t, you know, thankfully passed out or anything, that is truly amazing.

Jazz Sethi  3:07 

The doctor literally asked me, he was like, why are you not in a coma? And I was like, Wow, that’s a nice question to ask someone. But yeah, I don’t know how it happened. But my doctors also say that’s the highest they’ve ever seen. But it all worked out. Thankfully.

Pam  3:23 

Thankfully. And I always say mother’s intuition is like a thing. And all the moms I meet sometimes they’ll take their children to a few different doctors. And those doctors might miss the diagnosis and say, oh, they’re fine. But moms know like, something is up. So there’s a lot to be said for the mommy intuition. It’s like a special superpower. So well done to your mom.

Jazz Sethi  3:49 

Yeah, for sure.

Pam  3:50 

And so when did you start the D1abesties foundation? How did that come together?

Jazz Sethi  3:56 

You know, so after I was diagnosed, I did not know anyone with Type 1, till I started D1abesties, I did not have a single other diabuddy, I didn’t know anyone living with Type 1 Diabetes. And I kept thinking that that’s not okay. Because, you know, I kept thinking that I was the only one in school, I was the only one in college, who had it and things like that. And there was always something in the back of my mind saying, that something has to be done, something. I always kept thinking the Type 1 Diabetes was very boring on YouTube. I kept thinking that there was so much content out there, but it was so driven by healthcare professionals. And it was like doctors sitting on a grey background and giving you a two hour lecture. And I was like for a 13 year old, that’s not fun. So in 2018, we began the D1abesties Foundation, and it started off as just wanting to be a YouTube channel. That’s all I’m wanting to do. I wanted to make it fun and interesting on YouTube. And then when we started meeting other people with  Type 1 Diabetes, when we started understanding what the hotspots were, and it went beyond just it being boring on YouTube. It went into access, it went into education. And that’s how we sort of grew. And we’re four years strong now, and we have a lot of reach, a lot of projects, in different areas of the healthcare sector.

Pam  5:13 

Amazing. I love that. And I agree, diabetes online, until very recently, because of people like you, it was ugly, it was always the bad news stories. It was the amputation, it was everything that diabetes is really not. It’s not all a bad news story. And so I’m so inspired and happy for people like you, because as the mother of a child with Type 1, that gives so much hope to younger children for the future. And you’re such a great role model for doing that. What are some of the other programmes that you do?

Jazz Sethi  5:50 

So we have a couple of projects. So under our D1abesties, we have three different pillars, so to say. So one is awareness and access. One is education and one is support. Because I truly believe that for anyone living with Type 1 Diabetes, the three main things they require are access to a trained specialist, tools for self-management, and peer support. And we try to work around these three sort of areas. So some of the projects we do are education project. So project Kiran, for example, is inspired by my mother because she’s an educationist as well. And it follows Harvard Gardner’s multiple intelligence theory, it follows his differentiated instruction theory, because what we realise through meeting people was that every child learns differently. Every child has a different learning style. So some might, someone is a kinesthetically learner, someone is an interpersonal learner, someone is a visual learner. So we try to figure out how we could cater to every child’s learning needs by making Type 1 Diabetes Education funds. So for the kinesthetic learner, we would have board games and card games, but they could learn by doing. For the visual learner, we have like a pocket book, because visual learners like to read and like to understand. For the interpersonal learner who likes in groups, we have something where we do group interventions. So the idea is that no child should feel left out because they’re not able to learn in one particular way. That’s one of the projects which is really popular. Another project that is super popular is something called Back to Basics, where we do one on one counselling and education, because at least in India, what we found is that a doctor spends maybe 30 to 40 seconds with a patient because of the overburdened healthcare system. So it’s often very clinical, it’s often very one sided, it’s about writing a prescription and giving it out, but never really sitting and talking and understanding the person understanding the life behind  Type 1 Diabetes, and not just what keeps you alive. I think that’s two very different things. So sitting with them, understanding with them, talking to them, learning from them, teaching them to the Back to Basics session is something super, super popular. And then finally, our Diameets, which is the support group parties, we just had one last Sunday, we’re having one this Sunday as well, hopefully, in person, but it’s about celebrating  Type 1 Diabetes, it’s about meeting people just like you, and it’s really about bringing it out of the darkness and into the light.

Pam  8:13 

That’s really beautiful. And I love that you focus on those areas, because that is, that is so true. If you’re doing it right, you might go see your doctor maybe four times a year, but diabetes is with you, you know the other 361 days in a year, not even with your doctor a whole day. So it’s, it’s really, really important to have that extra support and that information. And I love that you’ve thought you’ve thought it out in a very scientific way as well, to speak to so many different learning styles. I think that is really amazing. And, you know, you’ve been diagnosed for a while, but at the same time, it hasn’t been that long, and you’ve come up with all these amazing tools and different things to reach and help so many people. That’s incredible. Was there ever a time that you found diabetes challenging? personally?

Jazz Sethi  9:06 

Oh, absolutely. I think, you know, when you’re in the early years, and you don’t know what’s happening inside you, there is a constant battle. I was diagnosed just as I was getting into puberty as well. And I gave my parents a lot of trouble. In retrospect, I was super hormonal as a teenager. But there was a time when you know, you know, those kinds, as a mother, I’m sure you know, as well that there are times when you can do everything right, but still, it doesn’t work out the way you want to do. And there was a time like that in the middle, where I was constantly just getting hypos and hypers. And I was not able to understand, and that kind of feeling of helplessness when you’re not able to control your own body. I think that is something that is absolutely frustrating. Because you feel like at least you should have control over your body. You should have control over what’s in your hands and when it felt like it’s out of hand. So there was a time when I was 15, or 16, everything was just going nonstop roller coaster. And I remember I was in severe diabetes burnout, and I woke up one night after like my fifth hypo. And just thinking that I’m not gonna correct this, let’s see what happens. It was just this sort of sense of absolute defeat, you know, it was like, I’ve done this five times, I’ve gotten up, I’ve woken up, I’ve lost sleep over it. So I give it to the fact that I was just not educated, I totally give it to the fact that I was living with it. I will I speak from a place of privilege. But I say I had complete access to all the medication. But I’d never had access to  Type 1 Diabetes education, because it just wasn’t offered, it just was not provided. So that’s why I keep saying till today that it’s not enough, given when we talk about access, we unfortunately only talk about access to insulin, we don’t talk about access to management. So I keep saying it’s not enough giving just free insulin, unless that child doesn’t know what to do with it. It’s equally dangerous, just giving someone free insulin because they could just completely take it wrong and again, end up in a in an outcome that we don’t want. So it has to go hand in hand.

Pam  11:09 

You’re absolutely right. One thing that I’ve noticed that really surprised me over the years was, okay, people have education about insulin and how to use it. But nothing else beyond that. And diabetes is so much more. And one thing in particular is sick day management, how to use glucagon. I was meeting moms that didn’t even know glucagon existed. And then after, I mean, I hadn’t met any parents of children with diabetes for several years. But as I started to meet more and more, it was like, you know, this is amazing, like, Oh, my gosh, tell us more. You’ve used glucagon. And what was that, like? And, and what did you do? And I mean, it is a very scary thing, because by the time it comes to that time, where you have to use a glucagon for sure, it’s very terrifying and scaring but the number of parents that were not educated about that, with access, as you point out was, was really, really baffling.

Jazz Sethi  12:08 

Actually, I did not know about it till I was 20 years old. And none of us knew about it, our doctors till today do not tell us about glucagon. So I found out about it after I passed out with a hypo, and I didn’t have it with me. And none of us knew, none of us knew that there was something like this that existed. So I totally understand what you’re, what you’re saying,

Pam  12:33 

Oh, my goodness, dear doctors, we love you, if you’re out there. If you’re, if you’re listening out there, please, please emphasise the importance of glucagon, and has the inhalable glucagon come to India yet?

Jazz Sethi  12:45 

Not yet.

Pam  12:46 

Not yet. It only recently came here to the UAE and just at my son’s last visit, we got some, which is pretty exciting. I hope he never has to use that. I’ve done it. Yeah, I’ve used the injectable one on him twice. And both times were terrifying, both because of a stomach virus. And you know, they, they eat, you give insulin and there’s insulin on board and then when they vomit, then the insulin still working, but no food was ingested. So. So yeah, those are pretty scary times. And I think a lot of the parents that have never had to use it, but they have the inhalable one, they feel a lot more confident if they ever had to. So hopefully not and you know, you never have that experience. But one thing a doctor, I was I was blessed. And again, like you say coming from a place of privilege. While we didn’t know anybody that had diabetes, and there were no paediatric endocrinologists here, because I grew up in Houston, Texas, I went back home and stayed with my parents. And I was able to go to one of the leading children’s hospitals in the world where I had no idea at the time, the doctor that they were assigning me to was one of the leading doctors in paediatric endocrinology in  Type 1 Diabetes, I had no idea about all of this. But that was incredible. And I learned so much from him. And the one thing he said to me about glucagon and hypos. He said, it’s not a matter of if you will use it, it’s a matter of when you will use it. So you need to learn how to do all these things. And especially because you’re living in a place where you’re going to go back and you’re going to be by yourself and you can’t just like pick up the phone and call somebody, even though I was calling him a lot or emailing him all the time with all my questions. So yeah, these, these things and understanding how they work and why we need them and how to use them and even practising. If you have a pharmacy instead of throwing away anything that’s expired, why not use that for education for your patients. I take all our old kits and I take them to the school, and then they train all the school nurses how to use it, so I never throw them away. Or I always say like I’m preparing for the zombie apocalypse. Like I’ll keep the expired ones just in case.

Jazz Sethi  15:03 

It’s I think you’re the epitome of upcycling.

Pam  15:07 

I don’t know, I don’t know. And so one thing that recently caught my attention following you on social media, which, which I love your, your feed, and your dancing is beautiful. And I want to ask you about that as well. But one thing recently that I really loved is all the myth busting that you’ve started doing, that is so needed. Please tell me more about that.

Jazz Sethi  15:32 

So I think we work a lot on language matters. I think that’s something that I have become so passionate about. And we sort of worked with the NHS to get the language matters India guide out. And this was back in 2019, or 20. Pre-pandemic, actually, we launched it. And it was developed over a course of six months, to really talk about language, not just being between the healthcare professionals and the people with diabetes, but also about language that we put out into the world. So general messages, I think. I really have found to believe that stigma arises when you think you know enough, or when you know enough of the wrong thing, you know, and it’s because of messages that we put out into the world. So something I’m very passionate about is language matters. And what sort of evolved from that was this message, one of the key principles of the Indian language matters document is called Type the Type where we talk about anything that you put out in the world, it has to have correct information. So when you’re talking about diabetes remission, you can’t just say diabetes remission, you have to say, Type Two diabetes remission. So we had this campaign called Call It Out, where it was enough of hiding, enough of complaining about with each other saying, oh, my god, they’re not doing enough or they’re not typing. We said, we’re just gonna call it out, we’re just gonna call out the nonsense, and we’re gonna call out the fake myths, and the false cures and the false promises, and we’re going to make them understand that it’s not okay. Because we were sort of faced with these outcomes, which are just terrible. We had parents going in completely unaware, and I don’t give it it’s not the parents fault. You know, when you just recently diagnosed, you don’t know about types yourself. So when people use hope as clickbait, it’s not okay. And we have to have the courage to call it out. Whatever the repercussions may be, and we’ve got people in India who are really, really big. And I mean, when you’re on the right side of history, I think it’s okay.

Pam  17:34 

I have just written down what you just said, when people use hope as clickbait, it is not okay. For the people in the back that did not hear that. That is so true. That’s exactly what it is. Yeah. And it drives all of us mad. And like you said, parents with newly diagnosed children, or even people with Type Two that are newly diagnosed, we want to find, first of all, why did this happen? How did this happen? And how can we fix it, I was desperately searching. I searched so many white papers, so many alternative medicine things. I looked everywhere. And I even went to, there’s a wonderful kind of integrated medicine centre here. And I even went there because I would go there myself for you know, acupuncture and some other things. And I met with the natural path there shortly after my son was diagnosed and to ask her, like, what can I do? You know what she did, she got up and she gave me a hug.

Jazz Sethi  18:42 

Wow.

Pam  18:44 

Because she even knew, thankfully, you know, she had the wisdom to know that there was no cure for this, there might be some things that I can do to, you know, support his health. But there are a lot of people or a lot of institutions out there that do. And even somebody just reached out to us. And often I’ll get a lot of calls when someone has a newly diagnosed child, because they’re looking for, you know, the cure, how can I fix it? And it is, you know, challenging and heartbreaking to sit there and have to really, you know, tell them and I do a lot more of course listening than talking because when they need to feel heard, they need to feel understood. But then I have to tell them that you know, look, there is no cure, but that will not stop you from living a full healthy life. But we just had somebody reach out to us asking us you know about stem cells, and can I go to a clinic and just get injected and be fine. And we all know there’s a lot of great research and advances in stem cell research, particularly for  Type 1 Diabetes and a lot of exciting things happening, but it’s there is no cure yet. If there was, we wouldn’t be having this conversation or we would be having a very different kind of conversation. But there’s clinics out there that are marketing that they do have the cure. And I’ve seen doctors present it in medical meetings where they have patients that go to these clinics, they spend their life savings on these miracle cures only, you know, then a few weeks later that their child is back in DKA. So thank you. Thank you, thank you for calling it out. I really love that. And it’s incredibly important because it happens in every country all over the world.

Jazz Sethi  20:31 

Yeah. And the place where I come from, which, like from India, we have it would be we have people who are using our blood sugars as a business marketing tool, and it’s, I’ve personally witnessed kids who have gone again, parents desperate for hope, desperate for any kind of cure from insulin, and they are ready to try anything. So firstly, to educate the parents, there’s a certain group of parents that we can educate, and they sort of understand that, okay, it’s not possible. But there is this group of parents that are so adamant that no, they will not try anything, not realising that it’s their child’s health, again, the child is small, can’t speak for himself or herself. So, and then we have people using that section of people who are desperate to propagate their own, I don’t know what their sort of cause in life is, as well, but whatever their purposes, but it’s about and then, you know, we’ve gotten such angry emails and angry messages, post this Call it Out, because we’ve been unabashed when we’re putting people’s faces out there and putting people’s names out there, not really caring who you are, I mean, you’re not doing something correct. So this was a, it requires a lot of courage, but you will be helping maybe three families out there who would have gone if you had not called it out. So try to think of that side of the spectrum.

Pam  21:58 

That’s, that’s really true. I do love that. And here we have, well, nobody, I can say, I’ve not seen any of these Miracle Cure offerings. Here in the UAE, where I’m living. In the US, there’s a lot of very high profile cases where children have died, because parents were wanting to believe into whatever was being offered. And if I come across, because I follow, I get the Google Alerts, you know, for diabetes in my inbox every day, you can sign up for it. And I would say, I don’t always read them now, because it’s kind of overwhelming. But I would say at least twice a week, there’s, you know, this miracle cure, or eat four blueberries a day, and cure your diabetes, I’m not kidding. Stuff like that. The latest superfood every other week, there’s a new superfood that’s gonna cure it or fix it. And not just for Type 1, this is for Type Two as well, that they’re really targeting because, you know, diabetes is a huge industry in many people’s eyes. And it is, but they’re, they’re missing the whole point. So here, we can’t really, you know, call people out, because then the way the law is structured, if somebody complained, then you know, the person doing the calling out could get in trouble. But be sure if it’s, if it’s back in the US, and I see something on social media, I will comment. I will say this is misleading. And, you know, there’s even sometimes in groups, mom groups, they’re like, hey, there’s this clinic that is saying this, like, I’ve already gone there and commented, and then the other moms will go comment. And it’s usually, you know, very, very professional not to slander anybody, but you know, when people start calling different things, or they say, oh, you know, or the other thing they do, they talk about people with diabetes and shaming and blaming people with diabetes is another point that I really kind of go crazy over. And my son was diagnosed at 20 months old. So when they make the correlation, like, oh, yeah, if people with diabetes just didn’t eat fast food, and I was like, yeah, my son at 20 months old was just like slamming down fast food. He wasn’t, he ate extremely healthy. And I made all the baby food, myself from all the wholesome organic things I could get my hands on. But that whole misconception because it doesn’t serve people to shame and blame them, and then of course, they’re going to hide their diabetes, they’re maybe not going to take care of themselves as well. They’re going to feel bad about it. And it’s just, it’s wrong at so many levels, all of that miracle cure shaming and blaming and the whole thing. Yeah. I love that you’re doing that. And I think everybody needs to speak up when they when they see that because that has to stop for the future of everyone with diabetes with the diagnosis or if you’ve been diagnosed for some time. Also for people with Type Two diabetes because as we know, no two people are alike everyone’s body, everyone’s microbiome is completely different. So what worked for one person, for example, I met a woman and she was always talking about how she reversed her diabetes by just, you know, juicing all the time and doing all this stuff. And even using reverse or remission in the context of Type Two, I think can be very a slippery slope and very tricky. Because if you stopped juicing, and you went back to eating, even just a balanced meal, your body may still react with some insulin resistance, it may not have been cured. So that is super tricky. And then I would be speaking somewhere or talking with a group of people, and then someone would often come up to me afterwards, not an obese person, not overweight, healthy. And I’ll never forget this one woman, she’s very small, petite, and she was almost crying. And she said, you understand me, you get it, she had Type Two diabetes, didn’t know why. And she never felt heard, because people were just like, oh, we’ll just eat healthy and do this and do that. And she was already doing that. But she’s still her body for whatever reason, decided it wanted to be insulin resistant. So a lot of these, you know, fake cures and empty promises are harmful at a very, very deep emotional level. And people are not even thinking or not even caring about the repercussions it’s having.

Jazz Sethi  26:38 

So true because I think we have to be so careful about the messages we put out there. Because things said in jest, also sort of deep root into your subconscious. And you start believing the things that you share outside. So I think even as Type 1 Diabetes community, we need to be really careful not to talk about Type Two being the easier type. And Type 1 being the more difficult type, because I’ve seen that happening as well on social media. And this is not a competition at the end of the day, you know, everyone is, is facing an internal battle that you don’t know about. So and I think specifically is people are living with a condition who that we know is so difficult. It’s not fair to typecast someone else’s thing you have you have it easier, because no one has an easier, you know, so I think it’s very important that we just stop typecasting things being very accurate about the information we put up and being very empathetic and non-judgmental about the information we put out as well.

Pam  27:37 

I absolutely agree. Like the no type of diabetes is easy, it doesn’t matter. And even people with the best intentions, say things to people with diabetes, and it within their family. Sometimes even doctors without thinking or nurses, say things that they never thought, that they think it’s helpful or something. And it’s actually really not. And it’s again, it’s nobody’s fault, but it’s just because like you said everyone is walking in their shoes fighting their own battle. And some things resonate very deeply with people. There’s a few people out there that, you know, they say, Oh, I’m not bothered by these things. But like you said subconsciously, at some level, maybe they are.

Jazz Sethi  28:25 

Which is why we even try to tell doctors all the time that do not use scare tactics, do not do fear mongering, you know, those pictures of amputated legs, it’s just not okay. And it’s just giving all the wrong messages. And you know, the side of their story is no, but they should know about computation, which I completely agree, to I completely agree that people with diabetes, need to know about complications that are possible, but you need to make people aware with care. And I think that care aspect gets missed when you just slammed down a picture of an amputated leg. There was this thing going around with like the ice cream stick being his leg and there was an ice cream cone as a leg…

Pam  29:08 

oh, I saw that picture. And I think in the show notes, I’ll find it and I’ll try to find it and we’ll put it in the show notes so you can see it. I hate the thought of even having it on our website, but you need to see this and I did that. Yeah, it no it’s not okay. And when I looked at that picture, and it wasn’t like, my heart sinking as if sometimes when I’m sad when I hear of a new diagnosis or something like this, it felt oh, it was disturbing. It just it’s very disturbing. Anger. Yes. I think it was a very deep anger and there’s you know, nothing funny about it. I’ve gone all out.  Once there was a very famous American comedian has a very famous like one of the late night shows, and Jimmy Kimmel made some joke about diabetes. And it was on his Twitter because somebody sent him something. And I went, I went really nuts on that. I did. And, and to the point where, you know, I kind of had to stop. And so what I decided was like always calling these things out, it’s counterproductive. Sometimes I’ll still, I’ll still call it out. But then I said, okay, if I put as much energy in for a guy, that’s probably not even going to read it, into creating content that’s positive and helping other people are talking to people like you, then that will serve a lot more people.

Jazz Sethi  30:39 

Absolutely.

Pam  30:40 

Even though if I ever see that man walking down the street, even though this happened like four or five years ago and be like, yo, Jimmy Kimmel, we need to talk. We need to talk. not okay. It’s not okay. So, yeah, he did. There were a lot of people commenting you know about it, but I just thought, No, it’s not okay. And especially when, when you know, people in the public eye and famous people do it, it seems to hide because you know, it has a bigger impact as people are listening to them more. So there’s that.

So tell us about your dancing, because it’s really beautiful, the clips you post online.

Jazz Sethi  32:06 

Thank you so much for that. That’s so nice. I began dancing when I was five. And then I just knew that this was something I absolutely fell in love with. And so I went to New York, I went to Broadway Dance Centre over there and did a certification course over there. And then I studied performance studies in Florence in Italy, which is what I have my diploma in. So I love, I love performing. I love telling stories. And I think time and space can tell stories in very different ways. And I try to use that part of my brain when it comes to diabetes as well. How do you put a more creative spin on things? How do you maybe do a performance and telling stories can come in different mediums. And I think we try to include that in the work we do as well. So I keep saying that my passion was always dancer and performance. And I found my purpose with diabetes. And D1abesties is where my passion met my purpose. And that’s what D1abesties is a little baby of.

Pam  33:03 

Oh, wow, that’s really beautiful. I love that. Did you ever find a time when, it was challenging dancing, and managing diabetes at the same time?

Jazz Sethi  33:14 

Yeah, I keep saying this at all. Like whenever I’m giving a talk that when I was diagnosed, I thought that I would have to stop dancing, because I didn’t know better. But you know, what I realised towards the end was that things were different, but nothing changed. So I would still have my eight hour rehearsal. But the difference was now that I would check multiple times I would have a pre snack, I will take a little bit of a rest in the middle, I would inform my colleagues about it. It didn’t change the eight hours still stayed eight hours. But the things I would do to prepare for it was slightly different. And I think that’s, that’s life with  Type 1 Diabetes, and nothing has to change about your life, things are just gonna be a little different. And differences not always bad.

Pam  33:55 

I love that actually. And then people that I see, because we know there’s also a lot of athletes with diabetes and other things like that. And what I tell some people, it kind of becomes like a superpower because you have to really know when you’re able to have optimal performance because your blood sugar has to be in range for you to be feeling your best performing at your best. So, you know, it’s almost unfair as like athletes have this amazing advantage where they know what their blood sugar should be to get the best performance. And no people without diabetes. They’re not they don’t need to check it. So maybe it’s sure there’s probably other indicators there. They’re looking at to understand different things, but it really can help you instead of hinder you in many ways, I think.

Jazz Sethi  34:50 

Absolutely. I think it gets a blessing in disguise. So you can really you know, use your passion to control your sugar’s better. Who would have thought?

Pam  34:59 

Right? It’s true. It’s true. So I see you dancing on Instagram. Do you also have your performances on YouTube or anywhere else that people can watch them?

Jazz Sethi  35:11 

Yes, there are a couple of on YouTube. And then we also do I mean, of course, in pandemic, no, but we have live performances happening throughout the year. And in fact, I am working on a performance piece about  Type 1 Diabetes, it’s been in the works for a couple of years now and not to disclose too much. But it’s the idea of having an invisible illness, so to say, and how do we depict that in a visible sense that people can understand, because I feel like performance is such a beautiful way to make the unseen seen, on stage. So we are working on something where we can try to make that invisible illness visible on stage. So hopefully, that comes up. And hopefully, with the span of a goes, we can have a live performance of this concept.

Pam  36:01 

That would be amazing. I can’t wait to see this.

Jazz Sethi  36:07 

Perform live over there.

Pam  36:09 

Well, this is what I was just gonna say, I would love to see that here. And there’s been a lot of shows happening. Like, you know, and I love here that the way they’ve opened, but they have like safe seating, if it’s indoors and different things like that. So yes, you must come. Oh, my goodness. This is ,this is great. This is really exciting. Wonderful. And yeah, you answered my next question. I was gonna say so what’s, what’s next? You already answered it. What else are you working on?

Jazz Sethi  36:45 

Definitely something that’s coming up. We just started something really fun. It’s called Blue Force network. And it’s the diversity is Youth Wing. Because I was very curious to know, like, in a juvenile condition, so to say, why are adults doing all the talking? And I do consider myself an adult now I sleep earlier. So adults. But I was just very curious to know, what does advocacy look like for a 12 year old? or what does education look like for an eight year old? And I think that kind of pedagogy that the Blue Force network explores, it’s about what does standing up for their Type 1 Diabetes mean for these young kids. So the Blue Force Network, that work is really exploring, that it’s exploring what advocacy looks like for the youth. So all our members are under 15 years old. And the stuff that they come up with the content that they come up with, it’s got a very fresh perspective to it, because we see  Type 1 Diabetes in a slightly different sense. And then they counsel younger kids themselves. So younger kids that who have been just diagnosed, there’s one thing when an adult is sort of telling them that I also have  Type 1 Diabetes, but it’s still, there’s an age gap. But when our eight year old is counselling, an eight year old, it’s an absolutely beautiful view and a sight to see, because you see the camaraderie grow right from there. So that’s something that we’re really, really excited about, as well.

Pam  38:08 

I love that. And I would love to hear your lessons learned from that, I think that is so important. And because of the pandemic, you know, we’ve not had these kind of meetups where kids can meet other kids. And I’m mindful of that also for my son who’s now 13. Because once he said to me, for example, you’re, you know, meeting up with some moms and children and, and he’s like, you know, just because we have diabetes, we don’t have to be like friends. I said, No, you don’t, you don’t have to be me. And I said, but you know, there may be some kids that are newly diagnosed, and maybe they have some questions for you. And I never forced him to be involved in anything that DIapoint does. On the contrary, actually, because it’s his decision and they need to feel comfortable. And I think you’re right about adults imposing you know, certain things like, Hey, I really want to advocate for this and you should too, but that, you know, isn’t really a win win situation. In the end, it can actually backfire and go the other way. So for them to feel heard by their peers and have a safe space where they don’t feel like there’s an adult behind it is so important. And you say you’re an adult, I don’t even want to know how old you are. Because I’m probably like twice your age. So you know, I’ll tell you like about my habits and then you’ll be like, ‘Oh my gosh, no, I’m a spring chicken’. You. You’re very young. No no. You are young adults, but still very young.

Jazz Sethi  39:35 

Alright, we just add…

Pam  39:38 

Okay, okay. Now, this concept of I think this whole concept of getting old. That’s a whole nother kind of podcast discussion, but never happens. Stay young always.

Jazz Sethi  39:51 

Age is just a number.

Pam  39:52 

Age is just a number.

Jazz Sethi  39:54 

And always check our blood sugars…

Pam  39:57 

yes, sometimes, sometimes. Yes. I mean, of course, we have to be mindful of them. Yeah, one thing that I kind of, I don’t know if I don’t want to say learned or that I came to terms with, is that when you have a number, because it can really give you a lot of anxiety when oh, my goodness, it’s, it’s so high, when is it going to go down? and especially early in diagnosis, and somewhere along the way, that song, you know, what goes up must come down. I think the song is called Spinning Wheel, I want saying, because then I’ll have like, you know, listeners of the podcast, the few that we’ve gotten so far. But I just started thinking, Okay, it’s up, but it’s gonna come down. And, you know, just this is a number in time in the moment. And that’s why I’m so happy that now clinically, they’re starting to look more at time and range A1C, I think, is still valid to look at, especially in countries where you don’t have access always to, or you can’t afford a CGM or other things. So I’m happy that people are now looking at more than just one number. But it is just a moment in time. And if you get very philosophical about it, you know, that’s really all we have, right? It’s just that moment in time, if you want to be very live in the present, I try not to live too much in the past. And try, I’m still as a mom always looking to the future to try to anticipate it. What’s going to happen, he’s eating this, he’s done this activity, what should we do, you know, this little artificial intelligence that’s swimming around in my brain. But I tried to just remember that it is that moment in time. And I think that also stems back to the first doctor that we had, he did such a great job of kind of coaching me, and I think he would coach his patients. And when we went back once, he retired A few years after we saw him, but the one time that we did go back, and then we check the agency, and it was higher than I would have liked. And he just kind of shrugged it off. And I was like, well, that’s like a really weird reaction for a doctor. And he’s like, you know, you didn’t get the number you wanted this time. So you know, you need to work on some things and change some things and for next time, and that was it. And he didn’t say anything else about it. And I was just expecting, you know, I was waiting for this, like, Oh, you should do this, you should do better. And that really kind of helped me say, Okay, how can we improve? What can we do better? Because otherwise, we get too caught up in the numbers?

Jazz Sethi  42:42 

Absolutely. And I think we have to understand that, we are name before we are a number, and we are a story before we are a statistic. And I think it can be very overwhelming when your body is covered with so many numbers. But to understand this beyond that there’s more to life than just a number. You’re right. I think this A1C sort of thing. I’m so glad that there are doctors out there who instill this in their patients and in the parents because I was yesterday talking to someone and she was like, oh my god, she was flipping out about the fact that the A1C was 6.7. And she wanted a six. And I was like, bro, calm down. 6.7 you’re fine. Like no, why is it six and I was like, Type 1. Diabetes is not a place where you can be a perfectionist, okay, things are gonna go up and down. That’s life. So I’m so glad I think that’s more kind of people that we need. We need people to be like, hey, it’s fine. Just work hard to an extent. That’s it.

Pam  43:38 

Yeah he was a real trailblazer. And I’m happy to say, because I was invited to a few meetings, the Arab Society of paediatric endocrinology here to give a parent perspective so that when they invite young, upcoming endocrinologist and diabetologists, and they would do education that they could hear from, you know, someone managing and living it, but that whole kind of positive outlook and getting them to empathise with their patients more and things like this. And I mean, yeah, that’s it, that’s a great number. And even by the International Standard, that’s, that’s below the standard, you know, we try to get as close to the standard as we can. And if it’s, you know, unexpectedly low, I’ll never forget the first time and my son was really, really small and I thought it was going to be a horrible number. We went and got it checked, and then they sent me the results that’s back when they had to do the blood draw. Right. And it was like a 6.8. And I cried because I couldn’t believe it. I thought we had we were gonna like vomit failed the test. And, and, you know, we always kind of strive to be around that number. Now if we can, but he’s 13. So there’s a lot going on, and you know, he’s getting his independence, then maybe he needs to have a chat with you because you’ve been through this. That age did you know…

Jazz Sethi  45:03 

You’re gonna have a wild time? Tell us about it. My doctor literally told my parents that do not come to me till she’s 19. Because the sugars are going to go up and down between 13 to 19. She’s like after 19 everything’s gonna sort out. And it’s literally happened.

Pam  45:21 

Oh my goodness. Yeah, I actually my heart sank a little bit inside earlier in our discussion when you said, Yeah, when I was 15, I was really difficult. And I was thinking, Oh my gosh, he’s only 13. You mean, like to do more in two more years, it’s gonna get worse. And he’s an amazing kid, like, amazingly responsible, he’s smart. He knows it all. But, you know, as a parent, always the parent child relationship. And you’re always, you know, even though I say, yeah, you know, it can’t be perfect, but you’re still always trying to do better. And just that, as a young 13 year old that’s trying to find their own way. It always creates that, you know, kind of parent child clash, it’s sometimes…

Jazz Sethi  46:04 

He can ring me up whenever he wants.

Pam  46:07 

Oh, thank you.

Jazz Sethi  46:09 

I’m a young adult over here, so I think the young part….

Pam  46:14 

Yes! He listens to young adults, he listens to young adults. Yep. Wonderful. Thank you so much. I appreciate that. So before we go, I always try to, like you said, your story before the statistic. And whenever interviewing people with diabetes, I always love to hear more about their personal lives and what they do, and you’ve shared your dancing with us. And, you know, just to make people understand that people with diabetes, they’re not just all about the diabetes, even though people like you are out there advocating and constantly trying to make it better for everyone else. But can you tell us some other things that you like to do in your free time? Do you have free time?

Jazz Sethi  47:04 

Good question. So I think last few years have been really sort of Type 1, Diabetes, D1abesties, but I do like to write a lot. So I do have a blog, which is everything but diabetes, because so much of my life is just diabetes. So I have a blog called all that jazz blog. And so I mean, I like to write so, I don’t get time to, but I like to write about just musings and poetry and things like that. I have published a book called If Only Words Could Breathe. And that’s all poetry as well. And dancing is a big part of my life. I love, I play the piano. So I like to find time to do that as well. Just hanging with friends, travelling a little bit, if possible, spend time with family. simple, basic, love reading. So try to do that as much as I can as well.

Pam  47:59 

Amazing. We will put links for everything in the show notes. I want. I want your book.

Jazz Sethi  48:07 

When I come and see you in Dubai. I want to give you the copies.

Pam  48:10 

Oh, and will you sign up for me? I’m so excited. And I’m excited to hear that you have a blog. I love the name of it All That Jazz. I’m sure it’s amazing. Jazz. Thank you so so much for taking the time to talk to me today. I really appreciate it. I appreciate you. I appreciate the way you inspire people and all of the things that you’re doing to make things better for people with diabetes. It’s absolutely incredible and inspiring for all of us. Thank you so much.

Jazz Sethi  48:49 

Thank you, thank you for the invite. And you too, are doing such an amazing job. And I’m so happy that we could find this time to do this. And upwards and onwards.

Pam 48:57 

Thank you so much. I really loved this conversation. I want to again, thank Jazz for Joining me to talk about all the amazing things that she’s doing and her wisdom. I feel like almost everything that she said was very poetical, very poignant, with very few words, some very powerful quotes, and very powerful thoughts and she’s really making a difference and having such an impact in the world. I feel so privileged and honoured just to know her and to have been able to speak to her today. So thank you again, Jazz. We really appreciate everything that you do. And thank you all for listening to the podcast. You can find it on all your favourite podcast channels. And if you like what you heard, please share it with someone or leave us a comment.

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Show Notes and Links

Disclaimer: It should go without saying that the Diapoint podcast is not intended as or should not be used as personal medical advice. You will hear us interview medical experts and others, but please always always ask your qualified doctor, diabetes team or other expert about your health. What works for one person does not always work for another person. What you should always do when you discover any new health information is ask YOUR doctor about it. This information should empower you to have a discussion with your healthcare providers about it. Diapoint, our guests, sponsors and business partners are not here to replace that advice. Living a full, healthy life means taking the proper medical advice from your qualified physicians, diabetes team or other healthcare providers.

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