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Shared experience

The ELSA study enables early detection of type 1 diabetes

“The long-term health benefits of screening outweigh the short-term stress” – Cerilyn tells us about her experience of finding out her daughter is in the early stages of developing type 1.
Content last reviewed and updated: 01.12.2023

Alys wearing her Dexcom glucose sensor with her JDRF teddy bear, Rufus.

Cerilyn found out her daughter, five-year-old Alys, has begun developing type 1 diabetes by taking part in the ELSA study, a JDRF-funded research project screening children in the UK.

The benefits of detecting type 1 early

We decided to sign Alys and her sister Emily up for the ELSA study because their dad and grandad both live with type 1. We thought ‘it’s only a finger prick’, so we just tried – we weren’t really expecting either of the girls to test positive. Detecting type 1 diabetes early was the main reason we decided to take part. The benefits of early detection include lower lifetime HbA1c levels, and a reduced risk of diabetic ketoacidosis (DKA) and long-term diabetes complications.

Testing positive for type 1

Shortly after signing up, we received the test kit in the post. All we had to do was a simple finger prick test and put blood spots on the card provided. The finger prick didn’t faze the girls at all – neither Alys nor Emily even remembers doing it!

Then, just two weeks later, a doctor from the ELSA team called us and told us that Emily didn’t have any signs of type 1, but Alys had tested positive for proteins called autoantibodies, which show that she is developing the condition. That call floored us. At first, I felt devastated for Alys, but then I thought that the ELSA study has given her the best possible start to type 1.

Next steps of the screening programme

The team gave us free travel from our home in Swansea to Cardiff hospital for Alys to have a further blood test to show which autoantibodies she has. It was quite nerve-wracking waiting for these results as it took a bit longer than the first stage.

A couple of months later, Alys had an oral glucose tolerance test, which the ELSA team let us do in the school holidays so that Alys didn’t have to miss any more school. The test involved not eating for eight hours, then doing a blood test, followed by drinking a very sweet-tasting drink.

To allow the doctor to take blood at regular intervals, Alys had a small tube called a cannula put in her arm. She didn’t like the cannula at all because the process was made more challenging by her blood clotting around the cannula. But the short-term discomfort and stress this caused her is far better than the lasting consequences of an emergency diagnosis of type 1 in DKA.

Support from the ELSA study team

The ELSA study team is phenomenal. Especially Dr Lauren Quinn, who answered all our queries, ran an education session with us and a closing interview where we could feed back on the study. The team also offered us support from a psychologist, but I didn’t feel like we needed it as we are coping well.

We are now under the care of a consultant at a local diabetes clinic and can still call the ELSA study team if we need anything. They gave us a Dexcom ONE continuous glucose monitor (CGM) to use every six weeks to monitor Alys’s blood sugar levels. She likes the CGM as she can wear stickers over it!

Advice for other families considering getting screened

I really recommend taking part in the ELSA study. For people with a genetic link to type 1, it’s important because having a family history of the condition increases your own risk. For those without family members living with type 1, it’s not something that’s in your world until it happens. So, the education aspect is crucial to learn the signs and symptoms of type 1 diabetes and help prevent a diagnosis in DKA. The long-term benefits far outweigh the short-term stress of going through screening. It’s well worth it! If you’re concerned about taking part, speak to the ELSA study team. They’re very reassuring and will walk you through each step.

Preparing for a type 1 diabetes diagnosis

Having advanced warning that Alys will develop type 1 diabetes has given us precious time to prepare for managing the condition. The challenges we had with the cannula during the OGTT have made Alys nervous about needing insulin injections. I saw other parents online using TickleF LEX to help their young children cope with injections, so we bought one to help Alys. We’ve all been practicing carb-counting and both girls have been getting involved in their dad’s diabetes management by reading out his glucose levels and helping with his injections. Alys is very into science, so she’s been learning all about how her body works and reading Super Sammy! (A Tale For Type 1 Superheroes).

Starting insulin in a controlled way

A few months after testing positive in the ELSA study, Alys’ blood sugar levels were increasing. She was having hypers every night, which made her very thirsty, and falling asleep in school, showing how tired she was. We knew that type 1 was approaching. So, we called our local diabetes consultant and began insulin treatment in a calm, controlled way in the comfort of our home – rather than in a stressful hospital environment – on World Diabetes Day 2023.

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