Fighting for families with inherited heart conditions

12 May 2014        

Fight for every heartbeat

Today we're launching our new Fight For Every Heartbeat campaign to highlight the urgent need for more research into the inherited heart conditions hidden in so many family trees.

We now estimate that around half a million people in the UK could be living with a faulty gene putting them at unusually high risk of developing heart disease or dying suddenly at a young age.

What is an inherited heart condition?

 Inherited heart conditions are heart conditions which are often passed on through families, because of a single faulty gene. There are several different types each affecting the heart in a different way. For many families the first sign there is a problem is when someone dies suddenly, with no obvious explanation.

This deadly legacy can span generations – someone living with an inherited heart condition has a 50/50 chance of passing it onto their children. Previous estimates suggested up to 380,000 people could be living with a faulty gene but underdiagnosis means this figure may be much higher.

Fighting back through research

Despite advancements in research into inherited heart conditions, many of which we've driven, lots of these faulty genes still remain undiscovered. Finding those genes through lab research is the first step towards developing improved genetic tests to find people at risk. An early diagnosis can mean the difference between life and death.

Our Medical Director, Professor Peter Weissberg, said: 

We urgently need to accelerate research into inherited heart conditions.

“We urgently need to accelerate research into inherited heart conditions.

“Over recent years researchers have made great strides in identifying some of the genes that cause inherited heart conditions. A genetic test in a child of an affected parent can save their life. More research is now urgently needed to identify all the genes responsible for these deadly disorders.

“Pinpointing genes which cause inherited heart conditions will allow affected children to be protected and, in the long term, will lead to new treatments to overcome the effects of the faulty gene.”

The campaign launches today on television and online and features a baby, Zara, whose mum, Caroline, discovered that she had a faulty gene for an inherited heart condition before she became pregnant. She knew that there was a 50:50 chance it could be passed onto her baby. 

We are calling for people to text FIGHT to 70707 and give £3 to join the fight against inherited heart conditions or to donate online.

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