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Patient story: Diabetes patient gets accurate diagnosis after taking part in research

Patient story: Clea St Jean

Someone is told they have diabetes every two minutes in the UK. Clea St Jean, a Bed Manager at Imperial College Healthcare NHS Trust, knows exactly how shocking this diagnosis can be.

“I sort of froze for a minute”, Clea recalls. “I sat there trying to process this news”. She was diagnosed with type 1 diabetes.

Diabetes causes blood sugar levels to become too high. There are two main types, type 1 and type 2. There are some other rarer types too.

Clea was coping with her diagnosis and regularly checking in with her diabetes team. She was attending one of her appointments at Charing Cross Hospital, part of Imperial College Healthcare NHS Trust, when she was invited to take part in a research study. An offer she accepted.

The MY DIABETES study, supported by the NIHR Clinical Research Network (CRN) North West London, was set-up by Dr Shivani Misra. It looks at the differences between young people with diabetes in different UK ethnic groups. Dr Misra said: “The aim is to describe in detail the kinds of diabetes people have when they are diagnosed before the age of 30.” Initial findings show that definitions of type 1 diabetes don’t agree across ethnic groups, suggesting a need to change the definitions.

The study involves taking regular blood tests. For Clea, this was originally once every three months but now once every six. This is not a major inconvenience, especially considering the benefits research can bring. “My thinking was that if I participated in this, and they found something, that it would assist someone else”, Clea said.

But taking part did more than help others. It identified the fact that Clea had been misdiagnosed. Blood tests revealed that she had a rare type of diabetes called MODY (maturity onset diabetes of the young). This type is inherited and caused by a gene mutation.

"It's life changing because that particular decision that I took, I know led me to finding the accurate diagnosis."

Clea’s clinics were transferred from Charing Cross Hospital to St Mary’s Hospital, where she received more specialised and appropriate care. Clea recognises how valuable her research experience has been in helping her to better understand her condition. She said, “My consultants would be treating me as a patient with type 1 diabetes, not knowing it is not this that I've got, it's one of the rare types of diabetes.

“It's life changing because that particular decision that I took, I know led me to finding the accurate diagnosis. And now I'm obviously going to get the right treatment.”

By taking part, Clea has allowed researchers to develop a better understanding of diagnosing diabetes accurately. This is important to ensure patients receive the appropriate treatment.

Clea is in no doubt that her decision to take part in research was the correct one for her. And she thinks others should take part too. “I would advise it definitely, 100% recommend it”, she said. “My team at Imperial College is amazing.

“They know what they're doing, they know exactly how to help you. So it is amazing and I would recommend it to anyone”.