Series 2 episode 6. Mendy Korer and Matt Johnson. Type 1 diabetes in very young children: a massive challenge for families and scientists

We hear from Mendy Korer about the enormous challenges of living with a child who was diagnosed with Type 1 diabetes aged 11 months. Matt Johnson, a research fellow in Exeter talks about his exciting work understanding what makes the immune system destroy the insulin making beta-cells in very young children. 

Transcript

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This is One in Six Billion, a podcast about diabetes and genes with me, Maggie Shepherd, and me, Andrew Hattesley. At that point of time, he was the youngest child in the world using this DIY closed -loop

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Welcome back to the One in Six Billion podcast. And today, what we're going to talk about is type 1 diabetes, but not just any old type 1 diabetes. Type 1 diabetes, which started in a child who was very young. What we'd like to do is to understand what that feels like as a parent, but also to understand the science behind it. And to help us with that, we have Mendy Cora and Matt Johnson.

So welcome to the podcast. It's great to have you both with us. And I wonder if we could start with you, Mendy, by asking you to introduce yourself to our listeners. Hi, thank you so much, Andrew and Maggie. My name is Mendy. I was born in Hackney. I live currently in Islington. I run a Jewish community center there. And we have blessed with five children. And the fourth child of our five is the one with type 1 diabetes.

Thank you so much for joining us. And Matt? Hi, it's great to be on the podcast. So I'm Matt Johnson. I'm one of the researchers in Exeter and I study extreme forms of autoimmune diabetes. Great. So we're going to start with you, Mendy. And I think it would be lovely if you could tell us the story of how your son was first found to have type 1 diabetes. So our son, Maisha, was 11 months old.

He had all the symptoms of type 1 diabetes. However, we had no idea what they were. So the first thing we noticed with my son was that he was drinking considerably more water. You know, by daytime, perhaps you don't notice it as much, but by night to the point of waking up in the middle of the night wanting to drink from his bottle and drinking a whole bottle down.

And then his nappy getting absolutely full, full, full, full throughout the day, just full. So there's just this water going through him. Then as the days progressed, we noticed him getting quite sleepy. we had a friend that has a daughter with type one diabetes. One time I'd mentioned something about it.

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was a Monday morning, some are always over a weekend is when conditions come up, you know, with children. So, so Monday morning, we go to the GP and it was my wife that went and took him. throughout the different tests, she suggests perhaps do a blood check, you know, knowing this from the friend that may be something to look for. And pretty much

immediately when they do the blood check, you know, exceedingly high sugar levels. And to explain, a healthy sugar level would be somewhere between four and seven, and his sugar levels were in the 20s and higher. And essentially, the doctor said, you need to go straight to hospital. The ketones were incredibly high to the point that his body was starting

to shut down. That's kind of how extreme it was. So we were in the emergency room of UCLH. And on that rare occasion where all the other people in the emergency room get forgotten and the entire staff was surrounding one patient, that was our son. Everybody's surrounding him and essentially just getting a needle.

into his bloodstream to be able to get the various medications into him was a challenge. So that sounds absolutely terrifying, Mendy. Can you tell us how you were feeling and your thoughts about taking your son in at that point? Ironically, I was doing the school run with the other children and my wife was the one doing

And she's way more kind of put together than I am. I would have been in complete bits had I been there in that room and only joined in after dropping the kids off elsewhere. So, you know, at that point, more just taking it all in and just breathing. And, you know, I guess the emotions we could talk about soon come as you, you need to process.

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diagnosis. So during those early days, some would have been getting fluid and insulin and presumably then they would start talking to you about the diagnosis of type 1 diabetes and what it meant. Yes, so firstly they transferred him over to Great Ormond Street just to stabilise his body. So he was there for a couple days.

And only after him being moved back to UCLH, did we get introduced to the type one diabetes team at the hospital and beginning to explain what the diagnosis is. And just in the hospital itself, there's a lot to take in. They know how to look after children with the condition, but what ends up happening is.

parents you've got like a week of lessons to learn how to manage this condition and there's so many different pieces and elements to figuring that out. So just as an example, carb counting. I never did carb counting before, who does carb counting? But then like the realization that for a young child every

is a carb, you know? And then like he's having a bowl of grapes, we need to count all the grapes, you know? And just those fine details of figuring out different foods. obviously now after many years, kind of we've got a feeler of different foods, how much the carb count is of each of them. But at that point, so many layers, you know, learning how to insert a cannula

putting a needle first in ourselves to learn how to do it and then putting it on our child. It's just a lot, a lot to take in and simply somewhat traumatizing as well. Yeah, it sounds really overwhelming. So not only have you got all the practical issues you've got to learn in terms of insulin administration and checking blood sugars, but also the emotional side as

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Yeah, the emotional side of just relating to what this condition is and having to accept that you've now got a child that has potentially a lifelong condition and all the unknowns of what future lies for this child, what opportunities or restrictions will happen and

you know, take it day by day type of advice is great, but it's a lot. It really, you know, it's, it's not, it's not an easy condition to have to accept, especially all the variables around it and the ongoing management of it as well. And constantly needing to figure out how to balance between

that management and at the same time giving space and it's a lot. One of the challenges of a 11 month old with type 1 diabetes is that they're going to need to have their blood glucose measured a lot and also to have tiny little doses of insulin. So did you use technology at the very beginning to help with

Indeed, it is very challenging. And at UCLH, they immediately in the hospital provided Meisha with the metronic pump and sensor. At that time, there was a certain amount of communication working between the two. So the pump that administers the insulin would

automatically be notified what the sugar levels are from the enzyme sensor. But the only automatic action it would do is if it's detecting that his sugar levels are dropping, it would shut off insulin. So that was the only element of non -human intervention. Computer

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management that that system provided. The team at the hospital were fantastic in giving support and ensuring that what we've got over here, we can overcome it, you we can manage it. So to the point that we had already planned a holiday break and it was over the Easter.

weekend and you know they wanted to make sure that we could go on our holiday. Yet what I would say is that the regular, at the beginning it's monthly and then every three months, meetings with the team and with the specialist, them being absolutely challenged in how to change the settings.

to be able to make the condition manageable. And they did a stellar job, given the technology and given the child that's so small at that time, but absolutely kind of not really getting anywhere, know, minimal progress in having some type of steady sugar levels. And that was probably for the first six

So, Mendy, a really difficult time following the diagnosis. Can you tell us what that first six months was like post -diagnosis emotionally for you and the family? Yes, very, very difficult time. Probably the hardest piece to that period was lack of sleep. You need to do

check sugar levels that things are okay and then you can just go back to sleep. Or if sugar levels are not okay, so then you need to give a correction, then you need to an hour later check again. And the impact of night after night after night of not having a straight night's sleep.

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In addition to just the physiological element of just not having enough sleep, there's also the element of wanting to make sure I'm looking after this child properly and almost at times getting frustrated and then trying to do the right thing and then it goes wrong and the levels are spiking and then dropping and rollercoastering. it's just absolutely horrific.

Because of the technology that he had, so the device had like a little alarm on the pump that would be able to make a beeping sound to warn us that he's dropping. when that shield that would drop, would block the insulin. What ended up developing from there was an alarm from a car down the road would go on and I would

jump out of bed in fright thinking that that's the alarm of his

And then you need to work throughout the day and have a possibly some type of social life. Just incredibly, incredibly difficult. If there would be a description of what living in hell would look like, it was something like that.

Well, that really sums up how hard it is living with a child with type 1 diabetes and how when you're seeing the professionals and it's not getting better. So where did you choose to go to try and improve things? So after six months, the specialist at our hospital suggested that we go

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join a study at Cambridge. And Cambridge University were running a study on using a closed loop system, namely that the pump and the sensor does more than just shutting off insulin, but also if sugar levels rise automatically on their own.

the system would go, or the computer would go and based on a number of different algorithms, administer insulin on their own. So a piece of technology, an advanced piece of technology, they were looking, if I recall at the time, for maybe 10 children under the age of six, and they suggested, you know, perhaps this would be something we'd like to do.

being it wasn't an experimental drug, but was just an experimental technology, we felt comfortable going down that route of giving this a try. So, you know, we go up to Cambridge and they pull up this special kit and they make a sign, all these different documents within them is at the end of this three month study, must return everything. And we

Together with a specialist and their team, with our son in Cambridge, they go and put all of this new technology on him. And, you know, at that time, he is now 17 months old. And one of the things that they need him to wear in addition to a pump and sensor is a phone, a mobile phone, which is essentially the computer.

that's doing all the thinking. Being that he is so small, what we end up finding is a jogger strap for a phone, but one that goes around the leg, so it's extra wide, and we strap it around his chest with the phone sitting on his back, t -shirt on top. So now we've got

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our son Misha but we've got

he's happy running around, crawling around, whatever he's up to. The instant change, in particular by nighttime, was just magical. Essentially, as sugar levels rise, on their own, the system goes and administers insulin and brings the sugar levels

gradually as opposed to abruptly, it's giving these micro doses. So just very subtly bringing those sugar levels down or coming a bit too low, shutting off the insulin and a straight steady line. And it happens again the next night. And the impact for me was one thing is, okay, I can have a straight night's sleep, but it's more than that. The idea that you can sleep

anxiety free. And having that lifted and knowing what it's like for any parent with a child with type of diabetes without this type of technology that even when they're sleeping, they're sleeping with that anxiety and being able to remove that was absolutely magical. So that technology with the closed

sounds like an absolute game changer for you as a family and not only in terms of the improved blood glucose levels but taking away that anxiety and stress in terms of what was happening to the blood sugars all the time. But you mentioned that was originally just a three month trial and you might have to give the kit back at the end of the trial, so tell us what happened. Indeed, we had to give the kit

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And already after one month into the study, we were aware that we're going to have to move back to the Stone Age. And I mean, and relatively Stone Age for us was the pump and sensor, which that was quite a luxury to have in comparison to some people still on just doing finger kind of blood checks and pen injections.

yet nonetheless, what we recognized is suddenly this technology makes the condition manageable. And until that point, it just wasn't manageable. So we did some searching and we discovered that there is a whole big patient led community that have gone and said,

We understand that red tape for governments need to be there to ensure that there's an overarching safety. Yet at the same time, we are willing to take on the risk, especially that the underlying condition is so unmanageable without technology that we're willing to take on that risk ourselves and go and build.

a patient -led device that could go and have all of that technology managing the condition.

So it took us around a month, so that's month two, in our three month study to obtain the different hardware. So it's a particular type of pump that you would need to get and a particular type of computer chip that gets fit inside a tic tac box. So as opposed to needing to wear a phone, you got a little chip with a battery and learning how to solder.

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Then after a month of getting hold of, and it was through friends and different people that we know, everyone's so helpful to try and, you know, do you know someone that has this and this piece of device? And then there was someone that we knew locally, who was a lecturer in university for electronic artwork. So we went to him and asked him, could he help us with code? And whereas

Nowadays, you could get this type of technology off the shelf from the different companies. Back then, we had to start learning code, know, computer coding. And it took us another month of getting all of that coding figured out that by the time the three months were up, that we had to return to Cambridge, study

closed -loop technology, we had this kit that we've now made ourselves and using that. At that time, he would have been, say, around 19, 20 months old. And I don't think he was the youngest child ever. However, at that point of time, he was the youngest child in the world.

using this DIY closed loop system. I don't know if I should say this, but credit to our specialist in the hospital that understood that we have a grasp of the technology, that they were willing to let us go down this route and use this type of technology to the point that ended

coming into the hospital and having a training session or a sharing session with a whole team about the technology. And then quite interesting, I'd gone with one of the specialists of UCLH to Parliament. And what had happened was I'd heard a MP at a debate talk about something around type 1 diabetes. So I'd sent him a message, an email.

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and said, you know, notice that you have, you know, have an interest in type one diabetes and MPI, I in Birmingham. And I inquired, would you be interested in hearing and learning about this, you know, latest technology? And he agreed. So I'd gone with our specialist. And essentially what the specialist was saying is, look what this family are using. And we've not been able to provide to.

families and this is what they're needing to do. And essentially we need to find a way to allow exploration in medical devices or which in different medical frontiers that are going to have at times patients going places which technology and the red tape haven't got there yet.

And how do we get the right balance? And interestingly, a week later, there was a debate in parliament about technology in the medical sphere. And that MP got up and spoke about, know, I just met someone with this. So it was very interesting to see that. And here we are five, six years, seven years later. And I think just recently, not just for children, but if I got this right for

All type 1 diabetes patients have the option now to have fully funded under the NHS closed loop systems. So it's quite exciting to see that journey. That's brilliant. And you're absolutely right. That has been a journey that started with patient power and helping each other to set up their

DIY closed loops and has now moved into the companies realizing that they needed to let it happen. And then actually Partha Kaur, who's been a guest on our podcast, has been absolutely critical in saying we should try and offer this for everyone. He's already done that with the glucose sensors and we heard from some of our other patients what a difference that made. And so this will be the next step. Yes, Partha Kaur, God bless him

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really pushing the frontier and on the note of kind of trying to have companies move on this. recall a number of years ago, this is pre -COVID, there was a conference in central London and the name of the conference was called Rise of the Machines. And they first had various UK -based medical providers speak.

Then they had various companies come in and speak and talk about, this is what's possible and this is what we're doing next. And then the third section were the DIY community, the patients speaking and talking about, well, actually we've already done that and we've done even further. So indeed it's really exciting the way things are developing. Right.

like to do now is to bring us into our other guests. So I wondered how you came to join the study that Matt Johnson is working

So at some point in that first year of Meisha's diagnosis, the hospital flagged up that there are various studies being done on exploring onset of extremely early onset of type 1 diabetes. And at that point, all what was being asked was to take a blood sample.

of which we willingly did. And a nurse came to our home and at some point when he was having a nap, they went and took a blood sample and that was that. However, some time after that, I was approached by the team in Exeter asking if I would consider being the patient representative on the study

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to join the quarterly meetings. And they have all these scientists and specialists from around the world that join and they're talking language that I don't understand. And on the rare occasion, I'll ask the dumb question, but it's been fascinating to see how studying works. you know, it's a big puzzle and eventually at some point.

that that puzzle of finding a cure will happen. And every time one more little piece to that puzzle. thanks so much, Mendy. Matt, can you tell us about the study that you've been leading and what happened to Moshe's sample? Yes, so this is the XT1D study, the extremely early onset type 1 diabetes study. And I lead the genetics component of the study.

And so what we're interested in trying to do is to collect samples from these very young children, close to diagnosis if we can, but if not, then whenever, and then use those to try and really unpick what's going on in the immune system that's leading to the early onset. Also look at the genetics of these children and see what's different about them that means they have such early onset. And then also studying things like biomarkers. So in terms of what happened to Moshe's sample, there's a couple of things.

we would have taken the sample and then immediately rushed it to our immunology center, which is at King's College in London. Luckily Moshe is based in London, so it's not that challenging, although we do do it from all around the UK and around the world actually. We then do a thing called flow cytometry, and this allows us to look really in depth at the immune system of that patient, but it does require that those cells are still alive. So we need to do that very quickly. And then we also then do some processes in the lab to separate the cells.

and then store them at minus 80 degrees. And that keeps them kind of what we call viable or alive. It means we can go and study them in the future and do other things with them. Also, some of those samples then come to Exeter. We measure things like islet autoantibodies. So these are markers of autoimmune diabetes. And then C -peptide, which is a way of indirectly measuring insulin production, which as we know is not happening, but we might think there might be some small amounts

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And we also get a sample for genetic studies as well. So we isolate the DNA and then we, that's the bit that I kind of lead on is trying to understand the genetics of these patients. So that's really clear, Matt. So what you're doing is you're taking samples and you're wanting to examine the immune system, both how the cells of the immune system are working and whether it's producing antibodies. And then you're looking at the genetic code and just thinking about it, you've got people who are having

Type 1 diabetes in the first two years of life. And normally we think that the immune system wouldn't really be mature enough. There must be some particular questions you're trying to answer when autoimmunity occurs this early. That's exactly it. It's almost a paradox. If you think, you know, we've got these babies where we're very careful around sterilizing their bottles, around keeping them free from infection. We worry when they do get infections, we know they get more sick than you would expect. They go down very hard.

And yet their immune system is in a position where it's able to very quickly attack and destroy the pancreatic beta cells that produce insulin. So really that's what we're trying to understand is how can the immune system go so wrong when it's still so immature? And the other thing about these patients is I'll just say that they're incredibly rare. So type 1 diabetes we know is a somewhat rare condition, but is out there in maybe one in two or 300 people. But to have it so young in that first year of life like Moshe, you're looking at maybe one in 25 ,000 people.

So it's a very rare condition. So we know that studying the rare conditions as has been spoken about the podcast can teach us a lot about the more common forms as well. So one of the things we've been looking at this podcast is genetic code and trying to understand how diabetes can result as a result of changes in the genetic code. And we've been

Hearing really there are two types of genetic code that were interesting and one is the one that occurs in the common forms of type one and type two diabetes, which you like is multiple minor changes, so almost like American spellings. And then the other one is when in one book, the one word that's badly misspelled and that's enough to cause diabetes on its own. Are you seeing both of these types of diabetes in the very young? Yeah, so

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We know that in those very young patients actually a sort of sizable proportion, but still a minority have monogenic diabetes. So that single spelling mistake that results in the diabetes and where it's autoimmune as well, we call it monogenic autoimmune diabetes. just to understand that you're saying that you've got a change in the genetic code, but it's not actually stopping the beta cells making insulin. It's altering the immune system. So it's more likely to

the beta cells. Yeah, so these are sparing mistakes in the genes that are really critical for controlling the immune system. So if you think our immune systems have to be able to react to all sorts of pathogens, know, everything around us in the world, but at the same time ignore everything within the body. But if that breaks down, if that control mechanism that keeps that careful balance breaks down, you can end up reacting to your own cells. So for example, reacting to insulin.

and then attacking the beta cells. And that's what goes on in autoimmune diabetes. So if they've got a problem with the immune regulation, which means they're starting to react to themselves, which they should not be doing that, are there other things that also get affected or is it just the beta cells that make insulin? What we tend to see in these patients is they have a kind of syndrome of autoimmunity. So they have autoimmune conditions all around their body. Typically though, we do find that

endocrine organs, so that means the parts of your body that produce hormones, that those are more likely to be affected. So autoimmune diabetes, autoimmune thyroid disease, these are things that are quite common in these patients. And we think maybe that's to do with the high production that these cells have to do. They have to make a lot of proteins, but they also have other forms of autoimmunity as well, some of which can be really life -threatening, things like gut autoimmunity that means that they just can't digest any food.

And so that's one way we can pick up these rare cases where it's the spelling mistake, the single spelling mistake, is by looking at the other things that they've got. If they have multiple autoimmune conditions, that makes it more likely it's one of these single gene causes. Whereas if they just have diabetes on its own, it's probably more likely to be polygenic or to be type 1 diabetes caused by those multiple spelling mistakes across the genome.

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So it sounds like there's quite a lot of variety that you're finding from the samples that you've received and you talked about how rare this is. So how many samples have you gotten from how many different countries? So if I talk just about the monogenic ones, the ones where we know we've made a diagnosis of a monogenic autoimmune diabetes, there's about 250 families at the moment and they come from around 40 countries at the moment.

That is something that's growing and we're trying to actively recruit more patients. So we're looking for anyone who has a child or is looking after a child who has multiple autoimmune conditions diagnosed in the first five years, or anyone with diabetes in the first year of life. We think those are the things that kind of make it more likely we'll find them on a genetic course. In terms of patients like Moshe, we're kind of building our cohort and actually we've got closer to sort of 900 of those patients at the moment. So those are people with type one diabetes presenting very young in

How young when it's type 1 diabetes, so there isn't a single change in the spelling but there's just a general predisposition. How young can those cases be? We've heard about Moshe being diagnosed at 11 months. Can they get even earlier than that? Well, actually, we were very surprised. So I think you've spoken about neonatal diabetes quite a lot, that in that first six months, it's almost always going to be caused by a single spelling mistake. But what we found is by looking at what we call polygenic risk,

looking at all of those little spelling mistakes that add up to cause the risk of type 1 diabetes, we actually found that a small proportion of patients who were diagnosed under six months actually have type 1 diabetes. So it's about 4 % of that group. So it's a really rare part of a really rare thing. But in those patients, they have very high genetic risk for type 1 diabetes. They have completely absent insulin. They progress very rapidly. And they have these antibodies that are a biomarker of type 1 diabetes.

So altogether that kind of demonstrates they are type 1 diabetes. I think the youngest one in that group that we've got was diagnosed at around the age of one month. So really, really rapid diagnosis. And actually one of the really interesting but kind of challenging parts of studying these people is trying to pick them out from monogenic diabetes. Because of course, we know there are still more genes to find. So it might be that they have one of these yet unknown genes.

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and they have a monogenic cause, or they could be type 1 diabetes, in which case we want to study them slightly differently. So last episode, we heard from Richard Oram, who developed the type 1 genetic risk score and really explained how he turned a very complex area into a number. And he's the person who's the main person on this study. So are you using his genetic risk score to help you find these unusual forms of type 1 diabetes?

Yes, so the type 1 diabetes genetic risk score has been absolutely transformative to the way that we do research in these patients. It's allowed us to try and identify those who are more likely to be monogenic, even if they don't have one of the known genes, or more likely to be type 1 diabetes when clinical features just can't do that for you. So we are using the genetic risk score in these patients. It's the first line test. So where a patient is referred, they have early onset diabetes and perhaps other autoimmune conditions. The first thing we'll do is do that type 1 diabetes genetic risk score.

If it's high, we know that it's likely we're not going to find a monogenic cause, a single gene change, so we don't prioritize them for those studies. But we do study them as type 1 diabetes. If it's low, it means it's very likely we are going to find one of these new causes. So we go on to do the genetic testing. yeah, the type 1 diabetes genetic risk score has really allowed us to kind of separate these groups out and figure out the best way to test them. So can you tell us what you found in terms of pancreatic antibodies in these

young patients who are diagnosed very early because we've obviously heard and talked about patients with type 1 diabetes who are typically positive to one or more of the pancreatic antibodies GAD, IA2 or zinc transporter 8. But what about this very young age group that you're studying? So generally in type 1 diabetes we think about 90 % of patients are positive for one of those antibodies, at least one of those antibodies. But actually as you get younger

the proportion drops and in the under ones, it's probably only around 40 to 50%. And the reason for that is not because they don't have autoimmune diseases and they don't have autoimmunity against the beta cells, it's just because their immune system isn't yet able to properly make antibodies. And we know that children's immune systems are immature, as I mentioned earlier about needing to sterilize bottles, needing to be careful about infections. But also if you think that we time vaccinations very carefully in children and we do it in such a way that means

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their immune system is geared up to make the antibodies that it needs to make at the right points. So what we actually think is that it's not that they don't have type 1 diabetes or they don't have beta -cellular immunity, it's just that their immune system can't make antibodies yet. So what I'd like you to do Matt is just to look towards the future. What would you hope that setting up this resource, what would you like to be able to find in the future from this work that's going

So the ultimate goal of everything that we do is to try and get to a point where we can either prevent or reverse diabetes. We can do something about it to prevent it and stop it happening. Of course, that's probably a long way off. There's a lot that we need to figure out first, but my kind of immediate vision for this research is that we're going to try and drill down into the mechanisms that lead to beta -cell autoimmunity and lead to type 1 diabetes. And it's only really by collecting these samples from these very rare and extreme forms where we might have a unique window

into what's happening into a single patient, what's happening in them, that we can try and figure out what the underlying mechanisms are that lead to the immune system going wrong and attacking the beta cells. So you're still interested in hearing about patients diagnosed very young with what looks like type 1 diabetes to recruit in terms of your studies. And people can find your details through our diabetes genes website? Yeah, absolutely. So the details of the studies are on there, but also my contact details are on there as well.

I think if you type in Matt Johnson Exeter, sometimes you get one of the rugby players down here. But if you look for the person at the university, that's me. Brilliant. Thank you very much, Matt. We might just pause there and see if there was anything Mendy wanted to ask you, having heard about the science. I mean, I think as a parent with a child with a condition, obviously, you know, thank you and thank you to all of you and all of your team. And I know

They always say it's a long way off to find the cure. But my question is, find the cure. Well, it's more of a statement than a question. Well, yeah, I mean, it's really inspiring to talk to people like you, and it really kind of reinforces what we're trying to do and why we're trying to do it. You know, I have young children myself, but I can't imagine how challenging it must have been to go through what you've been through.

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And it is certainly what we're trying to do. The good news is, progress is being made. we've had the first drugs for the prevention of type 1 diabetes approved in the United States by the FDA. And there are more coming on in the pipeline. And we're already showing that by identifying these very rare and early onset cases and understanding more about them, we might be able to better understand which are the best drugs to use in an individual patient. So that's kind of the long -term goal. So we are working towards it certainly. At the same time, we know that there are groups

and researchers working to try and make their own beta cells, make beta cells that can be put into patients. But of course we think probably we still need to find a way of stopping the immune system attacking these new replacement beta cells. So I think it all kind of works together and hopefully we're all pulling in the same direction and we're gonna get there. That's inspiring and again, thank you to all of you. Thank you both for a wonderful episode. It's been really good to hear about

side of being a parent and also to hear about the science. Yes, thank you so much for taking part. It was great to hear from you, Mendy, as a parent of a child with really early onset type 1 diabetes and to hear from Matt, the fantastic work that you're doing to understand why this happens. So thank you both. No, thank you. It's been a real privilege. Thank you so

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Listening to Mendy, it made you realise as a parent of a tiny 11 -month -old baby what it's like to have a diagnosis of diabetes and how suddenly your life, which is busy enough with five children, is turned upside down. Yeah, and listening to Mendy talk about that constant care that's required and listening to the alarms and not sleeping through the night and the worry and the anxiety.

that type 1 diabetes brings. Yes, and I think then when you've got an expert group of nurses and doctors supporting you and finding that the blood glucose control just isn't working and then how things were able to be changed with the technology and that trip to Cambridge showed what was possible and the immediate improvement and then their journey to find other people

enable it to happen as the trial ended and they had to give back the equipment. Yeah, I found it absolutely amazing to hear the story of patient power and them making their own pumps themselves and getting the technology together to develop their own closed loop systems. And I was very surprised to hear that. Yeah, it is a remarkable example of patient power and they took the responsibility. The companies were unprepared to risk

children having severe hypoglycemia because the pump got it wrong. So they said, we will take those decisions. And it meant each person had to write the code themselves, often with support, because then ultimately they were taking the responsibility. And it is something where what they did has ultimately led to the whole industry changing. And again, with the support of our friend Partha Kaur, that's really spreading

Yeah, absolutely. Thank goodness that the technology has improved and the companies have taken that on. So we're not relying on patients having to do that for themselves. And then talking to Matt, you can really see why he is choosing to focus on these people diagnosed in the first two years. And he described these two particular types, those with the single change, the so -called monogenic change in the immune system that results in the whole immune system going wild and producing not only type 1 diabetes, but also other.

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to immune disease. And then the other ones who have this very strong tendency towards type 1 diabetes. And we still don't know why people like Mendage Child will get type 1 diabetes. But that's the other group that we need to understand better. It's a really exciting area for research where we're finding out so many new things that we really didn't understand before, particularly in this group of patients who developed diabetes so early.

Yeah, and it's going to be key knowledge. Key knowledge, I think, not only for this very young group of patients who we really need to help the most because they live with type 1 diabetes for the longest, but also I think knowledge for all of type 1 diabetes that we start to get a handle on the immune system by studying the extreme cases. Yeah, really important work and I look forward to hearing how it develops in the future. So if you enjoyed this episode, then join us again in two weeks time.

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