The Happy Pod: Diabetes Awareness Month special

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Hello and welcome to a slightly different Happy Pod from the BBC World Service.

I'm Harry Bly.

And I'm Alex Ritson. In this edition, we're marking Diabetes Awareness Month, highlighting stories about innovation, advocacy, and education.

Like Leia, whose children's book has helped children come to terms with diagnosis. The woman who inspired a type 1 diabetic Barbie doll.

How one drag queen here in the UK is using her platform to raise awareness of diabetes. Plus Italy, which has become the first country to implement a nationwide type 1 diabetes screening program.

But before we get started, let's talk about what diabetes actually is. It's a range of conditions where there's essentially too much sugar in your bloodstream.

It's estimated more than 9 million people around the world have type 1 diabetes, including me and Alex.

But there are others, type 2, and the differences are, well, essentially, type 1 is an autoimmune condition. We don't yet know, doctors don't yet know what causes type 1 diabetes.

And then there's type 2, which is more lifestyle related.

There are other factors such as age, family history and ethnicity and then a couple of rarer sorts gestational people have it during pregnancy and other forms that develop during adulthood and it's a condition that has many misconceptions.

The symptoms of a low blood sugar attack are similar to drunkenness and many a young person has suffered badly or even died because of that and with pressure to avoid those low sugar attacks, many people allow their sugars to run high, but high sugars over time cause organ failure and make you go blind.

As we'll hear in our first story the most common treatment and the way many begin treating their diabetes is using a blood glucose meter and a finger pricker to test their levels and a pre-filled insulin pen to deliver insulin to the body to keep blood sugars stable.

Now an increasing number of people, including us, use a patch usually worn on the upper arm or leg that continuously measures sugar levels and an insulin pump which delivers a steady supply of insulin to the body, mimicking a natural pancreas.

So, let's start in Bosnia and Herzegovina, a final year university project that's gone on to help children newly diagnosed with type 1 diabetes come to terms with their condition, as well as educate others about it.

And it all started with a chance encounter. It was in September 2024 when Leia Laleta Sumer received this unexpected text message from a friend.

I got a message from Jay, who I've met at one of the IDF, the International Diabetes Federation, Europe's camps for people with type 1 diabetes. And he just sends me this screenshot that Harry posted

saying, Hey, I'm on vacation in Sarajevo and I need a new sensor.

And he just sent me the screenshot and he's like, Do you have a spare sensor? Can you help out?

And I was like, Oh, yeah, sure. This Harry, who was traveling there and needed a glucose glucose monitoring sensor, was me.

I can imagine what kind of shock it must have been to be somewhere on vacation, especially in a country like Bosnia, where we don't have all of these things.

In Bosnia and Herzegovina, there is limited availability of CGM sensors that people with diabetes use to monitor their blood glucose. In Sarajevo, we can get the bare minimum.

Whenever I needed sensors, I would turn on the car and I would drive to Croatia. And not only me, so that's most of the people that live here with Type 1.

Luckily, Leia did have a spare sensor for me, and it was at this meeting late one evening in Sarajevo's old town that I met Leia in person and learned about the children's book she had written as a university student two years prior.

Leia was diagnosed with type 1 diabetes when she was two years old and lived in the Netherlands.

There, she had been given books which helped her better understand her condition, but when researching for her own project, she found there were no such resources for children in Bosnia.

That was kind of the initial push or spark for me to create something to help mostly children out there to understand: okay, this is what I have to live with, and I'm not alone.

Her book, Leia and Her Diabetes, is based on her own life, written in the first person, where the main character, Leia, talks about being diagnosed. Here's an extract from the book.

I found out I had diabetes when I went to the doctor with my mum and dad. She pricked my finger with a special needle.
I thought it was very scary and I felt afraid. But don't worry, it doesn't hurt.

The doctor put a drop of blood in a little device to see if I was okay.

This is called measuring the blood sugar, and that's how I see if I'm okay. Most of the time, I am, but if I'm not okay, my mum gives me a different injection in my leg, and then I feel great again.

The book also talks about what diabetes is in a way that children can understand and aims to combat the stigma associated with having it.

Ask anyone who has diabetes, especially as a child, coming to terms with a condition like this is hard, and so is being open with those around you.

This is an important message Leia wanted to convey in her book. There's one illustration when my friend is sitting across me and she's like, hey, you don't look quite well.

Maybe you should check your blood sugar, which immediately lets everyone who reads the book know that I was talking with my friends about it, so they knew.

And that is a very, very important aspect, especially here in the Balkans and definitely in Bosnia. There's still this stigma about diabetes and that children shouldn't talk about it.

Not only children, but generally adults, kind of hiding the fact that they have diabetes. You do open up about some other hardships about feeling upset about having diabetes.

I really wanted to include that because it is, for me, it is crucial to mention:

yes, I did feel sad. Yes, I did cry.
I mean, till today, you know, I have moments when I'm like, why me?

I don't understand why I have to do these things when most other children don't. I asked my sisters, Irena and Anita, why they don't have to do these things.

They told me that I am special, so I have to do some special things.

They also told me that my injections are actually magical, and others don't get to have these magical injections.

To the little la in the book when I was six, for me, that was so cool. Tell me about some of the reaction you've had.

You've traveled around Bosnia, and you've shared this book with children and with parents, also children without diabetes. They're looking at the book and they're like, Is this you?

And I'm like, Yes, really? And I'm like, Yeah. And then they start, I mean, of course, they start asking everything, and how is it in school? And do you drive a car? And do you travel?

And do you do this? And then all you know how children are. And they really kind of were hugging the book if as if it was representing them and that was my

goal most of these children didn't talk about diabetes they didn't tell their friends i would get messages from parents and i keep them still who tell me thank you thank you because my daughter or my son they went to school with your book they asked their teacher hey could I get 20 minutes to talk about something?

And then they would read the book. And in the end, they would say, I have this too.

Every message, believe me, I was crying. Because through this project, I also healed little me because I didn't know many people with diabetes growing up.

Leia Laleta Suma, talking about her book, Leia and Her Diabetes. And that is such a huge issue that I can relate to.
You hate having an injection, and you also don't want to be different.

And of course, diabetes gets in the way of so many things, particularly in the old days. Playing sports, it really hangs over that, makes it so much more difficult.
So it's good work.

this year the toy manufacturer mattel launched a barbie doll with type 1 diabetes one of the women behind the design was emily mazreku who works for the international charity breakthrough t1d emily says it was an honor to be part of the process and that the doll makes her feel seen as someone with diabetes who has the same wearable monitors She's been speaking exclusively to Holly Gibbs and started by describing what Barbie with type 1 diabetes looks like.

She wears an insulin pump right on her waist, and that gives her insulin throughout the day as she needs it.

She's carrying a purse with her continuous glucose monitor app on her phone, and then you'll see that patch on her arm.

And so, that patch will allow those glucose levels to be seen on her phone for her to treat herself and make those decisions throughout the day that you need to do with type 1 diabetes.

And she also has a purse, which is really cool. It was a moment where the community, as part of the process, said, type 1 diabetes is 24-7.
It's a 24-7 condition that never stops.

And those supplies that she carries in her purse are representative of that. So you are, Emily, the real woman behind Barbie with type 1 diabetes.
Take us back to the beginning.

Where did this idea come from? Mattel and Breakthrough T1D partnered together.

Actually, Mattel approached Breakthrough T1D as the leader in the type 1 diabetes advocacy and research space to launch the first ever Barbie doll with type 1 diabetes.

That was about two years ago now, a little over two years ago. And from that moment, it was just an incredible honor.

It was an incredible moment for us at Breakthrough T1D because we knew just how much it would mean to the community. What is the one message that you want this Barbie to portray? We see you.

So this collaboration is a shared commitment to make sure that the millions of people with type 1 diabetes are seen, heard, and empowered with their condition.

And so one message we would always want to put forth with this doll and always want to put forth with everything that we do as we see you.

And Emily, how did you incorporate yourself and your own lived experience with this Barbie? I have lived with type 1 diabetes since the age of 22. I was diagnosed almost 10 years ago as an adult.

So this experience was both a professional and personal honor for me.

So as part of the design process, Mattel had asked as part of the design process for Barbie's continuous glucose monitor, her CGM, what a day with type 1 diabetes can look like?

What does it feel like? And I was having a day with type 1 diabetes where it can sometimes feel like a roller coaster on my continuous glucose monitor graph with my glucose levels.

And I said, I think I have an example.

And I took a screenshot of my phone and that screenshot ended up on Barbie's continuous glucose monitor app on her phone to just show the true lived experience and what it can feel like from day to day with this condition.

That is so cool. That Barbie is really personalized to you and your experience.
How do you feel when you look at type 1 diabetes Barbie and see that?

It's an incredible, indescribable,

deep-rooted, meaningful feeling. It's something that I will never, ever forget.
When I look at that doll, I see me. I see

my daily burdens from mental to physical. I see that newly diagnosed 22-year-old not sure where she would go in life and what she would do and what this condition would mean for her life.

I see that person and I see, wow, look at all of the things that we can do. Look at all of the things we've done.

And we've seen and heard some really lovely reactions from little girls who have seen Barbie with diabetes. We actually have some of their reaction here that we can play you.

It's a Barbie

and it has a pump like me and

a sensor on the arm there.

I really like it. She's so amazing.
She can teach you a lot about your diabetes. I've always wanted a doll that looks exactly like me and I'm sure other kids have too.

Emily, how does it feel hearing that? No words. Absolutely no words.

You really can't probably see me, but I'm peering up because That's the feeling that we knew it would mean so much to everyone living with type 1 diabetes.

And these kids being able to talk about their condition and feeling empowered enough to do it thanks to Barbie and feeling seen, there is no greater feeling than that.

And we are so, so, so grateful that kids around the world are feeling this, adults around the world are feeling this. People who are not even familiar with type 1 diabetes are seeing this.

And it's an indescribable feeling. Emily Mazreku speaking to Holly Gibbs, and it's quite an achievement to have inspired a Barbie doll.

And that Barbie doll actually reminds me of another thing, which is that now we know who the other people with diabetes are. We see them around the office.

In the old days, we all had to hide in corners we thought we were on our own.

You know, I even spotted a UK Prime Minister once with one of these things on her arm and realised she had diabetes because of that.

So it has enabled that sense of community, I think, in a way that we never had before. Now, we've heard what it's like to live with type 1 diabetes, but what's it like to perform with it?

You might be familiar with the TV series RuPaul's Drag Race. It's a competition that takes place all over the world to find a country's best drag queen.

Sally Tiem is a competitor from this year's UK version of the show. She was diagnosed with type 1 diabetes at the age of 10.

Sally has talked publicly and candidly about experiencing complications with diabetes, including problems with her vision.

Now aged 27, she uses her art and her platform to advocate for young people living with the condition. I caught up with Sally TM and started by asking her what it was like to get her diagnosis.

You can't really plan for it and prepare for it. It's such a life-changing thing.
For me, I think back then I was just like, whatever.

It was actually during more of my critical years where you have to have the responsibility. The thing that really snapped for me is when I said to myself, you've got this for the rest of your life.

It was harrowing to think that, like, my diabetes was going to be there for the rest of my life. Tell me about the process that you went through to finally accept diabetes.

It's something that we've been through.

But what was that like for you? It's sad to say, but it was when I started to get complications because of my errors with being frustrated by having diabetes.

Within COVID, I think it was 2020, 2021, I was diagnosed with macular retinopathy. The nurses'

words were this could be reversible but it's looking very unlikely and the thing is I'm an artist and I produce art I do drag there's two things that you need to create you need your hands and you need your eyes so for for me not to be able to have my vision and share that vision with people scared me so I just

made sure that I was doing the correct things to ensure that I was able to reverse what damage I've done to my body. I'm not surviving with diabetes.
I'm living with diabetes.

It's nothing that's kind of like, it's not holding me down as an individual.

Tell me about what it's like to perform with diabetes, because as anyone who's ever watched RuPaul's drag race will know, it's physically very demanding. I did have a hypo during that.
Really?

You could be the peak top athlete, but a hypo could easily take you out of it. It's being aware of where am I going, what am I doing at the moment.

I try not to make an excuse out of my diabetes for my skill set. I'm not going to cower behind the fact that I've got diabetes.
Sally, how have you incorporated diabetes and your

openness with being diabetic?

How have you incorporated that into your art, into your drag? Do you know what I find really interesting? It sounds so weird when I say it, but like, I don't get my eyes screened. Like, I really do.

Like, I really enjoy seeing what I can't see, which is the small, tiny blood vessels in my eyes.

I went to do a screening talk in drag, and for my outfit, I screen printed on fabric and created a dress, my retinal screening. I want to share my story and it to be from a very honest approach.

I think, especially with drag race, like I try to be so authentically myself, and I wanted to be able to use my platform of drag to raise awareness.

What inspires you to do that, to be an advocate advocate and to raise awareness and also to quite literally the expression to wear it on your sleeve?

You wore an outfit from a retinopathy screening.

People are so unaware of diabetes, I think. We were talking about World Diabetes Day with the Diabetes UK team and this year

they decided to go with the idea of stigma and it's still a massive campaign for stigma within diabetes.

People are so misinformed and often make jokes about it to the point where it's like, please read a book or like read some form of information around diabetes.

I remember being a child and literally feeling so alone because no one around me had diabetes.

So yeah, like the thing that I wanted to inspire is just there's more people out there than you think that have got diabetes. Sally TM.
And I can relate to that hypo experience.

You may remember, Harry, ages ago.

It's probably the thing I'm most known for, infuriatingly. I had a low blood sugar attack actually on the air while doing a news programme on the BBC World Service.

Yeah, a really, really scary experience. Yeah, it was horrible.
And

I came back after having had this low blood sugar attack later in the programme, explained to the listener what happened. And I did get lots of lovely messages from all over the world.

The only plus side of that awful, awful morning, and it is one of the worst mornings of my life, is it shows just how quickly these things come on in

audio form. I went from fully sensible to incoherent in less than a minute.

And that tape, I am told, is used by doctors all over the world when they're trying to explain to someone who hasn't been through these things what a low sugar attack actually is.

And for both of us working in live broadcasting, it's something extra that we have to think about before we come into work and go on air. And many other professions, too.

Coming up in this podcast, we'll find out what the future could hold in technology, treatment, and beyond.

There probably is a degree of cautious optimism from some of the studies coming out as to whether there finally could be that holy grail of the cure.

So I think there's a lot of good work going on in this field.

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There are some key symptoms that suggest someone might have type 1 diabetes, including constant and unquenchable thirst, frequently needed to pass urine, and sudden and unexpected weight loss.

But sometimes it can take a long while for a proper diagnosis, leading to risks of complications. Now, Italy has become the first country to implement a nationwide screening program.

I spoke to Professor Emmanuel Bozzi, chief physician physician of diabetes at the San Rafael Hospital Clinical Research Institute, who's pioneered the program.

Type 1 diabetes has a long preclinical period during which people are absolutely well. Blood glucose is normal, but there is a sort of incubation of the disease.

It can last a few months or many, many years. This phase is characterized only by the presence in the blood of specific autoantibodies.

And by doing a screening, we are able to know with a lot of advanced months or years who will develop type 1 diabetes. By knowing that

we can educate the child or the adolescent and his or her family, if type 1 diabetes is not treated by insulin, it is a lethal disease.

And there is still a residual mortality, even in developed countries, of a child

die because

type 1 diabetes is not recognized. Yeah, the classic symptoms that you go to your doctor with, where

your parents are having to say to the doctor, my child is drinking and drinking and drinking all the time. Most doctors ought to spot that, though.
Well, the doctors know, but sometimes they

evaluate but in many cases it is that the family is not going to the doctor. They think that the child is drinking because he's drinking, so with no specific reason.

And it is a remarkable thing that you've achieved this, given

all around the world there's such pressure on health budgets, but you've you've managed to convince the politicians that this really could make a difference.

Yes, in my opinion it is not very costly because I mean, we are talking about procedures which are not expensive. Now, there are studies

which are trying to evaluate the cost-benefit ratio. Because if on one side you spend some money to do the screening and to do the

monitoring and follow-up, on the other you have

if you have a dramatic onset of diabetes possibly associated with diabetic ketoacidosis, they invariably require hospitalization and sometimes even in intensive care.

So, you think that your program actually will save health services money in the long term?

Yes, in the long term, certainly. In the short, I don't know.
But of course, I'm a supporter of

screening, so my opinion could be biased.

Professor Emmanuel Bozzi, and if you take nothing else from this podcast, it's just that unquenchable thirst that I remember from before my own diagnosis, you are just so thirsty, and if ever someone in your life complains of an unquenchable thirst, it could well be diabetes.

Do get them to go to the doctor right away. You could save their life.
Absolutely. The three T's, thirst, toilet, thinness.

Here in the UK, a teacher has broken a world record by completing the fastest marathon by a male with type 1 diabetes.

Nathan Kilcourse beat the record by two minutes when he completed the Yorkshire Marathon in two hours, 28 minutes and 5 seconds.

Nathan managed to double his fundraising targets, achieving just over $2,600 for the charity Diabetes UK. The achievement has now been officially verified by Guinness World Records.

He spoke about this achievement, the preparation and the aftermath with the BBC's Samaya Moogle. Did you manage to do it? I did.

Well done. Thank you.
You're a Guinness World Record holder. Thank you.
How does that feel? Yeah, amazing. Amazing.

I managed to run two hours, 28, and 5 seconds, so just took over two minutes off the record.

That's quite a lot. I mean, it doesn't sound like a lot, but it is a lot in running terms, isn't it? It is, yeah, yeah.

It wasn't as easy as that sounds. It's shaving the two minutes off.
I had a really tough last couple of minutes to the race, a couple of miles, sorry, to the race. Yeah,

had to really dig deep to get to the finish line, but thankfully, I was able to.

And one of the things we were talking about, and the significance of this, was you were talking about your experience of living with type 1 diabetes.

And I remember you saying that you just don't know what your body's going to be like on the day.

And there's things you can control in terms of your training, but when you're living with diabetes, there's things that you can't. How was it on the day? Yeah, really tough.

um on the morning of the race i had really high blood sugar levels i think that was due to the stress and the anxiety of of prepare getting ready to run a marathon um

very close to the start of the race i i couldn't really make any adjustments to that so i just had to get into the race and go um my usual race strategy i'd have three or four gels throughout the marathon i had none on the day and i think that also impacted on why those last few miles was was so tough.

Why didn't you have any gels? Just because it would have sent my blood sugar levels even higher than where they were at. So I had to run pretty much the whole marathon on high blood sugar levels.

So yeah, it was tough. But thankfully I was able to, like I say, dig deep.
And how's your body feeling now?

Okay, yeah, okay.

The following day I was really, really sore, as you can imagine. But the past few days have been a lot better and I'm starting to recover.

So hopefully a few more days and I'll be okay and ready to move properly again. Well done.

I mean just running a marathon to be fair, it's like a massive achievement to get a Guinness World record at the same time, to raise awareness for diabetes as you've done. What about your students?

I know they were really backing in, really behind.

Yeah, well, we're on half-term now, so I've not managed to see anybody, but hopefully, by the time we go back, the record will all be confirmed because it's under review at the minute from Guinness.

So, yeah, really excited to see the kids.

You are definitely going to be the coolest teacher in school. Just saying.
Nice.

Another thing, on top of that, we've been able to raise nearly double the amount of money that we initially targeted, which is also incredible. And the support's been amazing.

Family, friends, everybody that's sort of been with me throughout the whole process. Nathan Kilcourse, speaking to Samaya Moogle.

Now, since I was diagnosed, the treatment options have advanced at great speed. I was the first patient ever in the hospital where I was diagnosed not to be given porcine insulin.

That's insulin made from pigs. I've been lucky to see the great advancements in artificial insulins and blood glucose monitoring technology.
Yes, wearable diabetes tech is advancing still.

Let's hear from some of you about how it has changed your lives and your hopes for the future. I'm on a hybrid closed-loop system.

It's really helped both me and my mum during the night because it changes the amount of insulin I need depending on my level.

In the close future, I hope not to need to tell the pump I'm eating, as it's another thing to think about, and I won't have any nasty, annoying hides when I forget to bonus myself.

It did take me a bit of time to actually trust the insulin pump because I've had diabetes for 20 odd years before I actually got the pump.

So I was used to doing everything myself to, so to trust the technology was a massive, massive jump.

Once I learnt to trust the pump, it just put my sugar levels within range overnight and then that in turn just improved my sugar levels drastically.

Tech like this has really taken a lot of the background stress away.

I think my hope for the future is that the tech keeps getting getting smarter and takes even more of the mental load off because reducing the constant decision making would make such a difference.

If it wasn't for advancements in diabetes treatment and technology, I would never have actually stood a chance at being able to manage my type 1 diabetes properly.

When it comes to the future of diabetes treatment and technology, I hope that focus continues to be on things like quality of life and not just keeping us alive.

My hopes for the the future is that everyone can get access to these insulin pumps because obviously cost is always a massive, massive thing for it, but they just improve my day-to-day so much that makes my life a lot easier.

Thanks George, Jai, Steph and Natalie for sending those. Professor Partha Carr is the UK's national specialty advisor for diabetes.

He spent his career leading the charge for patients across Britain to have easier access to technology to make the daily management of the condition easier and safer.

The way I always looked at type 1 diabetes from the outside was that you had to prick your finger physically, you had to look at a number, then you had to do some mental maths with the number, whether to give insulin or glucose, and then you had to give it.

And I think technology has now moved on to automating a lot of that, not fully yet. So you have sensors whereby which will pick up.
your glucose readings, it's available on your phone.

The insulin is mostly automated. You still have to put in a few things into the system about what you're eating, etc.

But in general, about 70 to 80% of what used to happen in type 1 diabetes is now but automated. So that's the huge leap, I would say, in technology, which has happened.

It's the best thing beyond the cure that at the moment science can provide to people living with type 1 diabetes.

I've seen you speak at numerous conferences.

You absolutely love. what you do.
You're not just a doctor who happens to treat people with diabetes. It looks like this is your life.
You've been awarded one of the UK's top medals, the

for your your work in this area what makes you want to do this what makes you into this kind of diabetes superstar that you are i think it always has bugged me that we don't provide the best care we can do we are one of the top economies of the world and why not so i think that's been a zeal and i've been incredibly blessed to have incredible friendships and relationship in the type 1 diabetes world and i think it gives you an insight that no medical textbook or universities teach you and the fundamental philosophy I believe in, what can I do to make your life a bit better?

And I think the final thing I always say to myself is that if I, if any of my loved ones had type 1 diabetes, this is what I would want them to be on.

And if that's what I want for my loved one, that's my job to get it to you. I feel lucky.
I'm in a relatively wealthy country. For me, getting access to this excellent treatment is easy.

There'll be people listening to this who aren't as lucky, who are in other parts of the world where the healthcare system's a bit more hit and miss.

When's this kind of technology going to spread everywhere?

I think the work of charities is quite important.

So if you look at Breakthrough T1D, for example, some of the work that they do, for example, the work they're doing in India and other places, is about raising awareness, is about trying to sort of talk to governments about how to improve type 1 diabetes care, get technology in there.

So I am very grateful to charities, whether it's UK-based or global-based, of the work that they do. But the basic bottom line will come down to what voice the people with type 1 diabetes can get.

And I think this is where clinicians like myself have a role to sort of use our privilege, for want of a better word, to open that door so that voice can be heard. So I think it will happen.

It's a matter of time, I reckon. But as a global community, we're moving in the right direction, but more work needs to be done as ever.

And of course, because of your role, you know better than I do what's coming. Where are we going with this?

What are the bits of technology that people don't know about perhaps yet that really excite you? So I think technology-wise, the sensors probably will become smaller.

It will become much more accurate.

Exciting research, which is in the pipeline, people talking about, can you detect that you might have type 1 diabetes, talk about immunotherapy and that sort of thing.

And there are finally, even though it's always spoken in hushed tone, there probably is a degree of cautious optimism from from some of the studies coming out as to whether there finally could be that holy grail of the cure.

So I think there's a lot of, lot of good work going on in this field, as I said, led by many charities, including Breakthrough T1D. The Holy Grail of the Cure.
Professor Partha Carr.

Now this music is something which, unfortunately, I've heard a lot. I really identify with this.
Yes, me too. This is the work of Sarah Warren.

She produced this from samples of sounds from her insulin pump and other medical equipment she uses on a daily basis. She calls this the soundtrack of her reality.

And she also composed the music you heard at the start of this podcast, using her own blood glucose readings every hour and mapping them onto a piano scale.

And that is the end of this special edition of The Happy Pod. This edition was produced by Holly Gibbs and mixed by Lee Wilson.
The editor is Karen Martin. I'm Alex Ritson.
I'm Harry Bly.

And until next time, goodbye.

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