The British Heart Foundation (BHF) is urging local residents to support a new Fund to improve genetic testing for families at risk of the undiagnosed heart condition that killed Sir David Frost’s eldest son last year.
The heart charity estimate that 11,000 people in Yorkshire and the Humber could be living with the faulty gene that can cause hypertrophic cardiomyopathy, which led to Miles Frost’s sudden death at the age of just 31 (1).
The majority of these people are undiagnosed and will have no symptoms. Although some people will live their lives unaffected, tragically, for some it can lead to a fatal cardiac arrest at a young age, often without warning.
The family believe that Miles inherited the faulty gene responsible for the condition from Sir David Frost. Although Sir David didn’t die of HCM, his post mortem found the disease was present. Unfortunately, Miles and his brothers Wilf and George were not tested for HCM at the time.
Earlier this week the Frost family, in partnership with the BHF, launched a charitable fund in memory of Miles Frost. The family hopes the Miles Frost Fund will stop more families going through the pain of losing a loved one to undiagnosed heart conditions, which kill 12 people aged 35 and under in the UK each week (2).
It’s estimated that one in 500 people are born with the faulty gene that causes HCM – meaning around 120,000 people are living with it in the UK. The condition means the muscle wall of the heart becomes thickened, making it harder for the heart to pump blood around the body.
Each child of someone with HCM has a 50 per cent chance of inheriting the condition.
The Miles Frost Fund aims to raise £1.5 million to setup a national cascade testing service for family members of those who have died of, or have been diagnosed with HCM. This will ensure more people receive the screening and treatment they need to prevent sudden death.
Wilfred Frost, younger brother of Miles Frost, said:
When Dad died we were all in utter shock.
He went far too soon. But when Miles died last July, it was even worse. To lose someone aged just 31, who was very much in the prime of his life, has been incredibly hard to take.
Miles, George and I were inseparably close – our Mum often said we were like triplets. Miles’ death will always be incomprehensible to us but the circumstances surrounding it have made losing him even more difficult to bear.
However, we are determined to look forward, and plan to use his passing to create a positive legacy by improving diagnosis for HCM. If the Miles Frost Fund helps to prevent just one similar death occurring, then Miles will not have died in vain.
Miles’ Mum, Lady Carina Frost, said:
I will never forget the joy of handing Miles over to David. David was just totally besotted with Miles the moment he was born.
He quite simply was born an old soul. And everybody was drawn to his wisdom, love, loyalty and laughter. After David died I just couldn’t have survived without Miles.
George Frost, youngest brother of Miles, added:
The hole left by Miles’ death can never be filled. But if we can help prevent other families experiencing something similar it will be a great relief. Miles, we miss you terribly, but you will never be forgotten.
Thanks to BHF research, many of the faulty genes that cause HCM have been found and a test to identify a gene mutation in family members of those who have died or been diagnosed with HCM is now available.
However, the rollout of this genetic test in the NHS is slow, patchy and there is no national coordination of testing for families spread across the UK. This means it’s a ‘lottery’ if family members of those affected by HCM will be referred to an inherited heart condition clinic for testing.
The money raised by the Miles Frost Fund will be used to establish a national cascade testing service, primarily through funding specialist genetic nurses and counsellors to work within inherited heart condition clinics across the country. This will help ensure people most at risk are referred for testing by the coroner or their GP and get the treatment that could potentially save their life.
Simon Gillespie, Chief Executive at the British Heart Foundation, said:
Worryingly, this inherited heart disease can be deadly if undiagnosed. That’s why we need to ensure that people in Yorkshire and the Humber who have a family history of HCM, have access to clinical and genetic testing.
Currently, there is no nationwide approach which means your chance of being referred for testing depends on where you live. Sadly, many individuals fall through the net which can lead to tragic consequences.
The Miles Frost Fund aims to address this issue and I cannot praise highly enough the courage and vision of the Frost family in setting up this fund. The money raised will help to establish a UK-wide cascade testing service for parents, siblings and children who could be at risk. Working with the Frost family, our aim is to ensure people who have HCM are identified and treated to prevent a needless loss of life.
To find out more about the Miles Frost Fund or to make a donation to support the rollout of genetic testing for HCM, visit: www.milesfrostfund.com.