Simon Clarke, lost his older brother Mike, to a heart attack in 2015.
Author: Matt MaddrenPublished 10 hours ago
Last updated 7 hours ago
A Cheshire dad has shared his story after the sudden death of his brother led to the discovery of a hidden genetic condition – and a life-saving diagnosis for multiple family members.
Simon Clarke, 31, lost his older brother Mike, to a heart attack in 2015. The 29 year old collapsed during a football match for Whitegate United FC in Northwich and, although stents were fitted, he passed away a week later.
Blood tests revealed that Mike had high cholesterol – something Simon and his family had always struggled with but never fully understood.
Simon, from Cheshire said:
“After my brother’s death, we all went for tests, I was found to have high cholesterol too and received support at Leighton Hospital’s lipid clinic. Medication helped, but there were still unanswered questions – why was this affecting so many of us?”
That question eventually led to a turning point, when Simon’s consultant referred him to a new pilot service screening for Familial Hypercholesterolaemia (FH) – a hereditary condition that causes extremely high cholesterol from birth and significantly increases the risk of early heart disease if left untreated.
Simon underwent genetic testing through the service and a few months later received confirmation that he had FH.
“It was hard to hear – no one wants a lifelong condition – but it wasn’t really about me. It was about getting answers for my family,” said Simon.
“The genetic testing means I now know I have a condition that, even with diet and exercise, will always be present. It allows us to plan and make sure that when the children in our family reach the age where they can be tested, we take that step and don’t ignore it.”
Thanks to Simon’s diagnosis, cascade testing began across the family.
His nephew – the son of his late brother – was just four when he lost his father. Now 13, he has also tested positive for FH and has already started medication.
“He’s been on treatment since he was 11 – that’s two years of risk reduction already. We can’t change what happened to my brother, but we can try to stop it happening again.”
Simon’s story is just one of many that highlight the impact of the FH genetic testing pilot launched in 2022 across Cheshire and Merseyside. Now, the service has been commissioned on a recurrent basis by NHS Cheshire and Merseyside, with support from Health Innovation North West Coast.
Since the service was launched:
More than 1,250 referrals have been received across Cheshire and Merseyside
201 people have been diagnosed with FH via genetic test
60 children and young people have been seen by the service, leading to 20 confirmed cases
Almost 200 family members have self-referred following a relative’s diagnosis
Professor Rowan Pritchard Jones, NHS Cheshire and Merseyside’s Medical Director, said:
“Early identification of familial hypercholesterolaemia is vital. With the right genetic testing and follow-up, we can reduce the burden of premature heart disease and intervene before complications develop.
“The early detection and treatment can bring an individual’s life expectancy back to near normal and the cascade model helps entire families. It’s a brilliant example of targeted, preventative healthcare.”