Tracy’s story: Knowing about type 1 diabetes earlier put us on the front foot - even if it wasn’t easy

We didn’t have type 1 diabetes in the family, and originally, I didn’t really know much about it – just that it meant you needed insulin.

Then, my son Joe was diagnosed in 2017, when he was 13. He was very unwell with diabetic ketoacidosis (DKA) and ended up in the high dependency unit. That was our crash-course introduction to type 1 diabetes.

After that, we were invited to take part in a regional research study, which was looking at family members of people living with type 1 diabetes. My husband, our daughter Jaz and I all took part.

"We were happy to do anything that would help researchers understand the condition more."

We had a blood test that looked for signals called type 1 diabetes autoantibodies. These are early indicators that type 1 has started to develop. That’s how we found out that Jaz had these autoantibodies. She’d just turned 16.

At the time, we didn’t really understand what having these autoantibodies meant for her future risk of type 1. But I now know Jaz is in stage 1 of early type 1 diabetes. This means she has multiple autoantibodies and doesn’t have high blood sugar levels yet. But it’s very likely she’ll go on to ‘fully’ develop type 1 diabetes at some point and need insulin.

The lack of information available at the time motivated me to later get involved with the UK Islet Autoantibody Registry. I’m part of the project team, and can bring my dual perspective of having a child who was diagnosed late and was very unwell with DKA, and a child whose risk has been identified much earlier. So, I can see both the benefits and the challenges of early detection.

The Registry will give researchers the data they need to be able to understand more about the development of type 1 diabetes. And to explore the best ways to support people at risk psychologically and to create a proper care pathway for them. For families like ours, it will be a place to go for trusted information and peer support.

"Crucially, it will also be a place to find out about opportunities to take part in trials for new treatments – ones that could keep holding off the full development of type 1 diabetes for as long as possible."

With studies like ELSA now screening more widely for autoantibodies, there’s going to be more people identified in the early stages of type 1 diabetes. So, the Registry will be hugely beneficial.

It’s been 8 years now since we learnt that Jaz was autoantibody positive. For Jaz, knowing her risk hasn’t taken over her life, but it’s always there, which does bring a bit of anxiety.

When she feels unwell, it’s in the back of her mind because we were told that illness could trigger her blood glucose levels to rise into the type 1 range. And she’ll sometimes ask to use her brother’s meter so she can check her glucose levels when she’s ill. It has also been frustrating at times because there’s such little awareness of this early stage of type 1 diabetes in healthcare. Jaz often has to explain everything herself to her GP.

That’s why having support, information, and care pathways matters – and why the Registry will make such a difference.

But the first step is knowing. And I would say to any other family: yes, it’s hard, but knowledge is power. Jaz would say the same. It means that, if the tipping point comes one day and she needs to start insulin, she’ll do so right away. So hopefully she’ll have a smooth landing and won’t get ill with DKA, like her brother.

And if research keeps moving forward, we’re hopeful there will be treatments that could delay when Jaz needs insulin therapy. That’s such an exciting thought! And with the Registry, it’ll be easier for people like Jaz to access these new treatments.

Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free Support Forum – to connect with others affected by diabetes (Minimum age 13). For more information, see Forum FAQs. For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.