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Shared experience

I would urge other families in Northern Ireland to get their children screened for type 1

Edelle Irwin lives in Northern Ireland with her three sons. She tells us why she’s getting her youngest son, Zach, screened for type 1 as part of the ELSA study.

A family who are screening the children for type 1 diabetes

I have three boys; my middle son, Shane, lives with type 1, and I regularly think about whether my other two sons may develop type 1 too. Now that the ELSA Study is available in Northern Ireland means that we can now find out if my youngest son, Zach, is likely to develop type 1 and, if so, start preparing for it.

The ELSA Study

The ELSA study is a research project co-funded by JDRF, which aims to screen 20,000 children aged 3-13 to find children at high risk of type 1 diabetes. The trial was launched in England, Wales and Scotland in on World Diabetes Day 2022 and in October 2023, the researchers expanded the screening to include Northern Ireland.

Screening for type 1 diabetes

As soon as I found out that screening is now available in Northern Ireland, I reached out to the ELSA team here in Northern Ireland and ordered a test kit, which shortly arrived at my home. Zach has autism, so the option to do the test at home removed the barrier of travelling to a centre. A few blood pricks later and we had a small sample of blood to send back to the ELSA team’s lab to analyse.

We aren’t sure yet if Zach will test positive for early signs of type 1, but if he does, it will give us a chance to start preparing for his potential diagnosis. We want to avoid what happened to Shane happening to Zach.

Shane’s emergency diagnosis

When my son Shane was rushed to hospital in 2014 and diagnosed with type 1 diabetes, we had no idea what to expect. Seeing my seven-year-old hooked up to all those machines, surrounded by nursing staff in a hospital bed will be forever etched in our minds. He was on the cusp of going into diabetic ketoacidosis (DKA) a potentially fatal condition.

Having no previous experience of type 1, we didn’t know what was causing his extreme thirst and weight loss, so we guessed it could be all the judo he was doing. If we had recognised these were symptoms of type 1 that day would not have turned into the emergency situation it was.

Preparing for type 1 diabetes

If the ELSA study shows that Zach has early signs of type 1, we would have the opportunity to develop a plan around managing type 1 and autism. Zach’s autism means he has sensory issues, so insulin injections and type 1 diabetes technology may be challenging for him. We may also face difficulties around hypo/hyper awareness and would need support around his care. Having advanced warning of a diagnosis of type 1 would allow us to prepare him by practicing using diabetes equipment. Preparation is key for our family, and especially for Zach.

Raising awareness of type 1 diabetes

Since Shane’s diagnosis, we’ve shared my knowledge and experiences with other families across Northern Ireland. I want other parents to have the tools to keep their children safe and possibly avoid a similar situation to ours with Shane. I share my knowledge through my role as Community Content and Information Lead at JDRF UK. I also run the T1 Club, a group for young people with type 1. Through our network of parents, we will promote the ELSA study as part of our work raising awareness about the signs and symptoms of type 1 diabetes.

Sign up to the ELSA study

Sign up today, wherever in the UK you live.

A dad taking his daughter's blood glucose levels via a finger prick test

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