The parents of a six-year-old girl have described the moment she was diagnosed with type 1 diabetes.
Jayne and Mike Fairclough from St Helens were told their daughter Libby had the serious and unpreventable condition in 2019, when she was aged three. Looking back, Jayne said: “All the signs were there, but we knew nothing about diabetes and never thought it would be that.
“We weren’t prepared for what was to come – diabetes took over our lives. Libby would cry with every blood test, every injection – it was really tough for all of us.”
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Launching on World Diabetes Day (November 14), a new UK-first trial led by researchers from the University of Birmingham is calling for 20,000 children aged three-13 to sign-up for ELSA (EarLy Surveillance for Autoimmune diabetes).
The screening will combine venous blood tests and finger pricking to detect autoantibodies in the blood, which can indicate type 1 diabetes sometimes decades before symptoms begin.
If two or more autoantibodies are detected, there is an 85% chance the patient will develop type 1 diabetes within 15 years.
Jayne added: “If we had known Libby was at risk of type 1 diabetes, we might have spotted the signs sooner and been able to prepare ourselves for her diagnosis. Screening for type 1 diabetes could help families avoid the shock diagnosis that we went through.
“When she was first diagnosed, I thought I’d never get my little girl back, but together we’ve learned how to manage her diabetes and it’s just part of our lives. Now Libby has a pump and she’s thriving. There’s nothing she can’t do. If our youngest daughter, Lottie is also at risk, we’d want to know. The ELSA study gives us so much hope for a better future for children who are at risk of type 1 diabetes.”
Type 1 diabetes is a serious condition that means the body can not produce insulin -- an essential hormone which allows glucose from the blood to enter the cells and give us energy. It is the most common type of diabetes, and is not to do with being overweight.
400,000 people in the UK are estimated to have type 1 diabetes, and early diagnosis is key to avoiding the development of DKA (diabetic ketoacidosis), a potentially fatal condition.
More than a quarter or children are not diagnosed with type 1 diabetes until they are in this dangerous state.
Similar programmes to ELSA running in Europe and the USA have shown that the monitoring and extra support offered can cause a dramatic drop in the risk of developing DKA.
Symptoms to look out for:
Going to the toilet a lot, especially at night
Being really thirsty
Feeling more tired than usual
Losing weight without trying to
Genital itching or thrush
Cuts and wounds take longer to heal
Blurred vision
Parth Narendran, professor of Diabetes Medicine and Dr Lauren Quinn, clinical research fellow at the University of Birmingham said: “Screening children can reduce their risk of DKA at diagnosis around five-fold.”
Serious damage to the eyes, heart, kidneys and feet can occur without proper treatment, and so the ELSA trial will do crucial work in identifying those at risk of type 1 diabetes at an early stage.
Dr Elizabeth Robertson, director of Research at Diabetes UK said: “ELSA will offer vital insights that could make screening for type 1 diabetes a reality in the UK, offering hope of a better future for people who are at risk of developing the condition in their lifetime.”
Rachel Connor, director of Research Partnerships at JDRF UK, which is co-funding the study, said: “Until now, the best way to find people who might be starting to develop type 1 diabetes was through research with family members of people with type 1. But, as around four out of every five people diagnosed with type 1 diabetes have no family connection to the condition, this approach missed far too many people.
“The ELSA study will be pivotal in finding children who will benefit most from the latest immunotherapy drugs. It will also prepare families for the signs of type 1 diabetes, so that no child has to go through the trauma of being diagnosed in crisis with life-threatening DKA.”
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