Six thousand born each year at risk of inherited conditions

13 January 2016        

Category: Research

Familial hyper diagram

More than 6,000 people are born each year in the UK with a genetic fault that puts them at risk of suffering from a potentially deadly inherited heart condition, according to new estimates we've released today

The figures show around that around one in 120 people are born with a faulty gene that puts them at risk of serious heart conditions such as hypertrophic cardiomyopathy and familial hypercholesterolemia. This means as many as half a million people are living in the UK with one of these genetic defects that can lead to a cardiac arrest or heart attack. 

Despite advances in research into inherited heart conditions, many gene defects still remain undiscovered. Funding research to find more of these defects is the first step towards developing improved genetic tests to identify people at risk so that they can be treated. 

The figures have been released as part of our latest campaign to raise awareness of the death and suffering that heart disease causes for people of all ages. Each week in the UK 12 apparently fit and healthy people aged 35 and under die of an undiagnosed heart condition. 

Sudden loss

Our campaign is being backed by Lizzie Jones – the widow of rugby league star Danny Jones who died aged 29 of a sudden cardiac arrest while playing for Keighley Cougars.

Lizzie Jones said: “I knew I was going to marry Danny from the first time we went out. Losing him that day devastated our family. 

"It just didn’t occur to me that a seemingly fit and healthy athlete like Danny could ever be struck down with a heart condition- it can happen to anyone. Raising our twins without Danny is hard. 

"In future, they will be tested for the inherited condition that Danny died of. I just hope that by telling Danny’s story, more support will be given to finding new treatments for these conditions that could one day benefit my children.”

Research to identify those with inherited heart conditions

An inherited heart condition can span generations: someone living with certain types of inherited heart condition has a 50:50 chance of passing it onto their children. 

Our research has helped make great progress in identifying some of the gene defects that cause these heart conditions, and as a result genetic testing is now available for many people with a family history of an inherited heart disease.

Our Medical Director, Professor Peter Weissberg, said: “We urgently need to accelerate research into inherited heart conditions that take the lives of hundreds of young people in the UK every year, often without warning.  

"Only with people's continued support will we be able to fund more research into these gene defects so that patients at risk can be identified before they have a serious cardiac event and so that we can work towards developing treatments to neutralise the effects of the faulty gene."