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Shared experience

What it’s like being screened for type 1 diabetes

Clare shares her experience of taking part in the ELSA Study, research funded by JDRF to explore screening for type 1 diabetes in children.

A photo of Lauren, Sophie and Emily.

Clare has three daughters, 16-year-olds Lauren and Sophie and 14-year-old Emily. Sophie has type 1 and Emily was screened for type 1 in the ELSA study when she was 13. The ELSA study is a project JDRF are co-funding which is screening children aged 3-13 in the UK for type 1 diabetes.

In this blog, Clare shares her daughter’s experience of taking part in the ELSA study.

Why get screened for type 1 diabetes?

I decided to get Emily screened for type 1 diabetes as Sophie’s diagnosis was a shock for us. We wanted to know if she had a raised possibility of developing type 1 so that we could be prepared. Sophie was diagnosed in diabetic ketoacidosis (DKA), and we knew that if Emily tested positive, the study team would help us to prevent this happening to her too.


What happens in the ELSA study?

The test kit arrived in the post and was very simple to understand. It contained everything we needed. We pricked Emily’s finger with the blood lancet and filled four small circles on the test sheet with drops of her blood. We let it dry then packed it up in the provided envelopes and popped it straight into the post. The test took no time at all, so it was very easy taking part in the ELSA study.

Getting the screening results

We weren’t worried about taking part in the study because it seemed a straightforward process. Emily didn’t seem phased about being screened. The finger prick initially made her a tiny bit anxious, but she soon overcame this. Sophie supported Emily going through the trial, talking her through the finger prick. The wait for the results was a bit nerve racking, but we received the results by text first then received a letter. Gladly Emily was negative.

Get screened for type 1 diabetes

Find out more about the ELSA study.

Sign up to the ELSA study to be screened for type 1 diabetes.

UK children aged 3-13 can be screened by the ELSA study, whether they have a relative with type 1 diabetes or not. A platform called INNODIA runs a screening programme for people aged 1 – 45 years who have a parent, sibling, or child with type 1 diabetes. Find out more about INNODIA and sign up for their screening study.

Further reading

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The ELSA Study

Find out more about the ELSA Study, which Amanda helped design.

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