Elis living with condition which killed his dad at 30
ELIS Power works, exercises and goes out with friends just like any other 23 year old.
But he also lives with the knowledge that he suffers from the same heart condition which killed his fit and healthy father without warning.
It could strike at any time, sending Elis’ heart into an abnormal rhythm.
As a result doctors have recommended that he has a special defibrillator implanted in his heart over the next couple of years, which would automatically deliver a lifesaving shock should the worst happen.
Now Elis, who was just three when his dad died, is speaking out about his inherited condition as part of a campaign to shatter misconceptions about heart disease and encourage families to protect their loved ones by understanding their family history.
“People tell me ‘ You don’t look like a person who has got a heart condition’,” said Elis, from Coity, Bridgend.
“I am not overweight, I hardly drink, I don’t smoke and I don’t eat takeaways all the time.”
He said doctors cur- rently think it’s unlikely he could suffer the same catastrophic event as his dad but that the condition could worsen over time.
Elis added: “It’s a low risk but it’s still a risk at the end of the day.
“The way I look at it there’s no point me dwelling on it. I try to go about my day as normally as I can because, at the end of the day, I could be hit by a bus.”
Elis takes care to eat the right foods, exercise as much as he can, and also drinks very little.
But the hypertrophic cardiomyopathy which he inherited from his dad and which also affected his grandad and his uncle will remain with him no matter how healthy his lifestyle is.
Caused by a faulty gene it causes the muscle wall of the heart to thicken. The thicker it is, the harder it is for the heart to pump blood. Common symptoms include shortness of breath, palpitations, chest pain and fainting.
But Elis’ dad Raymond, who played rugby and squash, had no idea he had the condition and had suffered no symptoms before he collapsed and died at work in Sony Pencoed in 1997. Even Elis’ mum, Ann Harrison-Power, a cardiac nurse, did not spot anything unusual about her husband before his death aged 30.
Constant screening since then saw Elis formally diagnosed with the same condition around a year ago. But long before that worried doctors banned him from rugby and football, sports he loved, as a precautionary measure.
Elis, a special investigator for the NHS, now works closely with charity Cardiomyopathy UK and is helping to launch its new campaign, Know Your Heart Story.
He wants others who have had sudden cardiac deaths in the family to find out more about how their relative died because, if the cause can be inherited, they may have it too.
“It can affect anyone. It’s not down to lifestyle. It’s about one in 500 people so it’s not as rare as you think.
“A lot of people think it’s rare because it can go undiagnosed for years and years,” he said.
Hypertrophic cardiomyopathy often strikes down otherwise healthy people. High-profile cases have included the son of former Wales football manager Terry Yorath. His son Daniel, 15, died after a kick about in the back garden in 1994.
The genetic condition was also behind footballer Fabrice Muamba’s collapse on the pitch during an FA Cup quarter final in March 2012. Medics battled to save his life, later revealing he had technically been dead for 78 minutes. He recovered but was forced to retire from football.
Elis said: “It is so important just being more conscious about it. If there is someone in your family who has had a sudden cardiac death it could be cardiomyopathy.
“Knowing about it is important because you can be proactive.”