If something is better for your child, it’s better for your whole family

“My aunt lives with type 1 diabetes (T1D), and she received information about early detection through a friend who works at Breakthrough T1D. Our kids are the same age, so we enrolled them in the ELSA study at the same time.

Since the screening is free, I thought, ‘why not participate?’

A few weeks later, the results came back negative for my daughter but positive for my son, Ezra.

Getting diagnosed

Finding out was quite a shock. I didn’t know anything about T1D. Once I got the call, my first response was to think that it might be a false positive, but another blood test at the hospital in Cardiff confirmed that he was in stage 2. The ELSA team then walked us through a lot of helpful information about type 1 and what Ezra’s results meant. That gave us the space to ask questions and get our heads around our son’s diagnosis. 

Preparing for later stages

Type 1 is unique in that an early-stage diagnosis doesn’t mean you will be living with the condition imminently. It could be tomorrow or it could be in ten years. But this gave us the time to sort support for Ezra.  

We worked with our local paediatric diabetes clinic to create a plan. We would have regular check-ins to monitor the progress using a continuous glucose monitor (CGM), which gave us real-time insight into Ezra’s glucose levels. Since then, we’ve seen some change in his levels, but he still isn’t experiencing any symptoms. 

Ezra and his school adapting

This has also helped Ezra cope. He knows bits about it and he’s not frightened of some of the unknowns ahead of him, which he would have had to endure all at once if he hadn’t been screened. He is quite proud to show off his CGM stickers to his friends.  

It’s been an education for his school, too, before he’s on insulin. While they have two other children with T1D, they are still learning about stage one and two. They don’t need to act on changes in his blood glucose just yet, like they do for the other children, but they’re getting used to his CGM and making sure everyone is aware of the four Ts: using the toilet more, being thirstier than normal, being thinner or losing weight, and feeling tired. 

Feeling like you’re in a waiting room

A lot of people describe the time after receiving a positive result as a waiting room, which can be difficult – having that anxiety hanging over you. But for me, having this knowledge has been hugely beneficial because if something is better for your child, it’s better for your whole family. 

Imagine having to take in all the information we have over the last year in one go, while your child’s unwell and you can’t think clearly. Whereas now, we’ve got everything in place. We’ve got a diabetes nurse and Ezra is already used to going to his appointments.  

Unlocking opportunities

Since participating in the ELSA study, we’ve also aided research into his condition. First, in the ARAD study that examines the factors determining the quick or slow onset of symptoms. We enrolled in the Barricade Delay trial, which is looking to understand if the drug baricitinib can delay the onset of stage 3 T1D, but he isn’t currently eligible. We’re going to re-screen again soon to see if we can contribute, though.

Knowing also made me seek out others in our situation. We joined the ELSA group on Facebook and other stage one and two diabetes groups. That’s been valuable as well. We’ve found others in our situation, we’ve read their stories, and we can share experiences with them.  

Nobody thinks this will happen to them

Since Ezra’s positive test, I’ve shared ELSA with everyone I know. Nobody thinks this will happen to them, but the majority of children diagnosed don’t have any family history. That’s why it’s important that we don’t only screen children who are at the highest risk, but others as well.  

For me, early detection screening is a no-brainer. Adjusting to life post-diagnosis hasn’t come without bumps in the road and a steep learning curve for us, our local diabetes care team, and our school. But the benefits outweigh the negatives for our family.