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Gareth's story: discovering I have neonatal diabetes changed my life

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Gareth Roberts

Diagnosed with neonatal diabetes in 2008.

I found having diabetes hard at times. It’s just one of those things that is difficult when you’re young. I felt different. But, I was never restricted from doing anything.

Gareth was diagnosed with type 1 diabetes at just eight weeks old. Years later his diabetes nurse suspected he actually had neonatal diabetes, a rare form of diabetes caused by gene mutation, and invited him to take part in a clinical trial that could radically change his diabetes treatment. ​​​​​

Journey with diabetes

Gareth's neonatal diabetes story

Whilst taking part in a photoshoot for our membership magazine, Balance, Gareth opens up about life with neonatal diabetes and a trial that radically changed his treatment. 

 

  • Misdiagnosed with type 1 diabetes at eight weeks old
  • Was prescribed fixed insulin injections, but suffered lots of hypos which impacted his quality of life
  • In 2008, following a genetic test, Gareth’s condition was reclassified as neonatal diabetes and he was weaned off insulin and onto gliclazide
  • He says the change in his treatment has transformed his life

Life with diabetes

Starting treatments

I was put on insulin, and my parents had to give me injections.

I was on two fixed injections a day and I had loads of hypos. My dad always goes on about how many times he’s saved my life! 

My brother was four when I was born, and my parents would ask him to keep an eye on me and let them know if it looked like I was having a hypo. Now that I think about it, that was a lot of pressure to put on a four-year-old.

Life with diabetes

Emotional challenges

I found having diabetes hard at times. It’s just one of those things that is difficult when you’re young. I felt different. But, I was never restricted from doing anything. You hear of horror stories of people not being allowed to do things like sport or go to parties.

Because my mum and dad were nurses, they knew what to do to keep me healthy and that diabetes wasn’t the end of the world. I was able to do sport and go to parties. Other kids’ parents would sometimes panic about it and say, ‘what do we give him?’

My parents would say, ‘don’t worry, we’ll sort him out when he gets home.’

 

Health and active living

I was always active and sporty. I did football, running. These days I cycle a lot. Before my diabetes was re-diagnosed as neonatal, I made sure I’d powered up before any activity to try to avoid hypos. When I was younger, the one time I was allowed sweets was when I’d been running about. 

Treatments

What has helped me most?

In 2008, my diabetes nurse at Blackpool Victoria Infirmary recognised I had an unusual form of diabetes. She put it to my consultant, who contacted researchers at Exeter University, saying he thought he had a person with diabetes that would fit the profile they were looking for. I’d recently had my appointment at the diabetic clinic when I got a letter which said I may be eligible for a trial that could radically change my diabetes treatment. 

When I saw my consultant he said, ‘this is a complete shot in the dark, but it could change everything. I don’t know that much about this type of diabetes, so I’m trying to read up on it now.’ After some tests, I was quite quickly diagnosed with neonatal diabetes. That meant I could come off insulin and onto a family of tablets called sulphonylureas. I take three in the morning and three at night and I don’t need to take insulin any more. 

It’s transformed my life. I don’t have hypos any more. I do have ‘dips’ which feel a bit like a hypo, but I never go that low, and I can more or less eat what I want. I now consider myself an ‘ex-type 1’. I’ve been told that I may have to go back to taking insulin in the future, because not enough is known about neonatal diabetes. It’s a case of waiting to see how things progress. 

Now, I like being a ‘test dummy’ for the researchers at Exeter University. Through them, I’ve met a lot of people who have been diagnosed with neonatal diabetes along the way. A lot of them are young children. For their parents, it’s freed them from the nightmare of worrying about your children’s blood sugar getting dangerously low. 

 

Biggest challenge

My biggest challenge has been dealing with hypos. Sometimes you can feel them coming on and you have enough time to sort yourself out, but other times they hit so fast that you have no idea what’s going on. You hear of people being arrested for being drunk, but they are actually hypo. 

With type 1 diabetes, not enough people know about the condition or know what to do when a hypo hits. And if you’re hypo, you can just lose control so quickly. It’s a scary thing. 

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