Vicky's story: As someone with type 1 diabetes, I wanted to know my children's risk

I've been living with type 1 diabetes for almost 20 years. I was diagnosed when I was 29, and at the time I knew very little about the condition. Like many people, I was aware there was a type 1 and a type 2, but I didn't really understand what type 1 diabetes was or how it developed. 

My diagnosis came in the way that many people still experience today. One week I felt fine. Two weeks later I was exhausted, constantly thirsty and losing weight. I felt really unwell. After seeing my GP and having blood tests, I got a phone call telling me I needed to go to hospital. It all happened very suddenly. 

Since then, type 1 diabetes has simply been part of my life. Technology has transformed how I manage it. I now use an insulin pump and a continuous glucose monitor, which have made things so much easier than when I was managing with finger-prick tests and injections alone. 

Testing children's risk of type 1 diabetes

Because I have type 1 diabetes, I'd always been aware there was an increased chance they my children could develop it too. I found myself reading about inheritance and risk and several years ago decided to take part in TrialNet, a study for relatives of people with type 1 diabetes. Through this my children were tested for type 1 diabetes autoantibodies, which could tell us about their risk of developing type 1 in the future. 

At the time, my son Toby tested positive for a single autoantibody. The study eventually came to an end, although I knew this result meant he had a higher risk of type 1, there wasn't much else we could do with that information. 

It always stayed in the back of my mind. If Toby seemed unusually tired, or if he was going to the toilet more often than usual, I'd find myself wondering whether something had changed. Sometimes I'd check his blood glucose levels just for reassurance. 

Finding out Toby was in the early stages of type 1 diabetes

Last year, I read about the UK Islet Autoantibody Registry in Diabetes UK's magazine and signed up. I decided to have both of my children tested for autoantibodies again. 

My daughter's results were still negative, but Toby was now positive for two autoantibodies, meaning he was in the early stages of type 1 diabetes. His blood sugars are in the normal range and he doesn't have any symptoms or need any treatment, but we know this is very likely to be in his future. 

I was devastated for him. Living with type 1 diabetes myself, I know exactly what the condition involves day to day and how much thought goes into managing it. 

In some ways, we've already been through the pain of finding out now. When his diagnosis happens, it will be less of a shock. Most importantly, we're not waiting for him to become seriously unwell before discovering he has type 1. 

One of the biggest challenges of early-stage type 1 diabetes is uncertainty. I work with data and statistics, so my immediate reaction was to look for the numbers. How long do we have? What is the average time before someone fully develops type 1 diabetes? What happens next? But there isn't a simple answer. Some people progress quickly through the early, symptomless stages and others much more slowly. 

One of the things I've valued most about joining the Registry is being connected to experts who understand early-stage type 1 diabetes. The team helped explain what Toby's autoantibody results meant and shared information that answered questions I'd been trying to find answers to for years. I'm very aware that early-stage type 1 diabetes is a new area of care. Having somewhere to turn for reliable information has been incredibly reassuring. 

The Registry has also helped us stay informed about emerging treatments or trials that could become relevant for Toby in the future and help slow down the development of his type 1. 

And for me, it isn't just about Toby. It's about helping researchers understand more about how type 1 diabetes develops and improving care for others like Toby in the future. 

Things are changing incredibly quickly and are very different than when I was diagnosed 20 years ago. Not only can we identify people before symptoms develop but there are now immunotherapies that can delay type 1 diabetes in some people. 

As someone who lives with type 1 diabetes, I know how valuable even a few extra years without it could be, especially during adolescence and early adulthood. 

And if they can find something that delays it for a little while, hopefully they can find something that delays it for longer or even stop it altogether. 

Toby's 16 now - enjoying life getting ready for his A-levels and spending time with his friends. Right now, my biggest hope is that he gets as much time as possible to enjoy being a teenager without having to think about insulin doses, glucose levels and all the decisions that come with type 1 diabetes. 

And if he does eventually progress to a full type 1 diabetes diagnosis, he'll be prepared and I hope his experience will be very different from mine.