Delaying type 1 diabetes (T1D) before it starts

The power of research

I’ve seen how important scientific research is. Whenever I read studies involving thousands of people I wonder, where do they find all those volunteers? So when I saw a social post for a study on children and type 1 diabetes, I thought, my 11-year-old daughter, Imogen, could be one of those people. 

That how I came across the ELSA study, which is looking at T1D risk in children. I volunteered before even mentioning it to my husband or Imogen. I knew being the child of someone with type 1 increased her risk. 

Imogen’s initial test in December 2023 and didn’t hear anything more for a while. Then came a phone call, Imogen had tested positive for one autoantibody linked to type 1 diabetes. We were invited to Birmingham Children’s Hospital for further testing. 

In May 2024 Imogen had her first ever blood test and she was brilliant. We went shopping afterwards and visited the cat cafe as a treat. I was feeling cautiously hopeful, just had one autoantibody might mean she’d never develop T1D. 

But within weeks, more tests revealed she had three autoantibodies. She was in stage 2 of type 1 diabetes. That means her body had already started attacking its own insulin-producing cells. Now we knew that she would develop type 1, we just don’t know when. 

I was a bit gutted, I’m the only person in my family who’s got type 1, so I had this sense of guilt. “Oh gosh, she’s going to hate me when she’s 13, when she becomes diabetic.”  

Learning about teplizumab

Imogen did a Glucose Tolerance Test (GTT), the only bit she really hated was the drink! Her glucose levels went up, and then it came back down again, but slowly. That’s when we met Dr Renuka Dias, a consultant in the ELSA study. She told us about teplizumab, a new treatment that can delay the onset of type 1 diabetes. Teplizumab isn’t approved for use in the UK, but it has been available in the US since 2022. 

My husband Gav, Imogen’s dad, and I had lots of conversations. I’ve got lived experience of T1D, I know how tough it is. Gav doesn’t, but he’s lived through the alarms going off at night and sees what this condition means for our family. He brough a different perspective, asking the doctor questions to understand the benefits of this. 

I was very keen for Imogen to do this, but I didn’t want to be a pushy parent. I got other people to ask her, when I wasn’t there, if she was nervous, or scared or she didn’t want to do it. She just took it all on the chin and did it all and went for it, it’s amazing. 

After some back and forth with the hospital, we were told that Imogen was eligible. The treatment was 14 days of daily infusions, so we arrange to stay in Birmingham during the Easter holidays 2025. 

It was nerve-wracking hearing about the risks, but the hospital team were brilliant. Imogen was given medication to prevent potential side effects. She had no serious issues, just a bit of a rash on her face on day one, which turned out to be from resting her cheek on her hand while on her phone!  

Those first five days were hard. We were in the hospital for long stretches for observations. Around day five, Imogen’s T-cell levels dropped, and it looked like we might have to delay treatment. Thankfully, her blood test results showed her T-cell levels went back up and she carried on. 

The whole thing was a new experience. We were on the Children’s Clinical Research Unit, which was a much more comfortable than I expected. Gav even joked that he was expecting “plasma balls” everywhere. It was just like being in the hospital, only an incredibly quiet ward. Gav took over for the second week so I could work remotely. He couldn’t believe how straightforward the drug was to administer. It was all very matter of fact. 

Imogen did really well through this entire process. That’s who she is as a person, always the first to put her hand up in school plays, never afraid of an audience. She’s got my ‘I’m just going to get on with it’ attitude and her father’s sense of humour. 

Looking to the future

If you told me, before I was diagnosed, I could have this medicine for two weeks and then I could delay it for up to 2-3 years if not more. Would I have taken it? Absolutely.  

Other families might have a different story, there are lots of reasons why somebody might not want their child to have this, but you only know if you give it a try. 

It was worth it. Not just for Imogen, but for improving our understanding of this treatment. Imogen might have been years away from symptomatic T1D, or we might just have caught her at the right time. We just don’t know. 

As far as Gav and I are concerned getting her through her GCSEs without a diagnosis is huge. Adolescence is horrendous anyway, if we can get her past that point, that’s going to be brilliant for her. 

I talk openly about what we’ve done. With friends, other parents, and people in the type 1 community. Because I want others to know this isn’t scary. It’s hopeful. 

Now Imogen is back at school, getting ready for her year 6 residential trip and drama performances. She’s not thinking about diabetes right now. She wants to be an actor or a writer. And that’s all that matters.