Over 250,000 people could be living with condition linked to early heart attacks

3 December 2015        

Category: Survival and support

Familial hyper diagram

There could be over 250,000 people living with familial hypercholesterolaemia in the UK. This is twice as many people than previously thought. 

FH is a genetic condition that leaves people with dangerously high cholesterol from birth, which significantly increases their risk of a heart attack. We're calling on health services across the country to carry out nationwide testing.

FH can shorten life expectancy by decades if left untreated. Of the estimated 250,000 people living with FH, less than 10% of all those affected are thought to be receiving full treatment.

Despite recommendations National Institute for Care and Health Excellence (NICE) that the NHS rolls out FH testing for families across the UK, setting up of FH testing has been slower in England and Scotland. 

The key to preventing early heart attacks caused by FH is early diagnosis. The younger someone is identified, the earlier they can begin to be treated before the high cholesterol causes permanent harm to their arteries.  When their diagnosis has been confirmed they can receive support for a healthy lifestyle and reduce their risk of dangerously high cholesterol. Statins may be prescribed adults or children over the age of 10.

If people are diagnosed early enough and given early statin treatment, lifestyle advice and careful monitoring, the life expectancy of someone with FH is that of the general population. 

How we’re helping

FH nurses

To start tackling the problem, we’ve funded 25 FH nursing posts across 13 different locations  to make sure millions of people have access to testing. As those posts have been set up over the past two years, 974 people have been tested and 38% of those tested have been shown to have FH, ensuring they get the treatment they need. 

Research we’ve funded into Familial Hypercholesterolaemia

Over the past 30 years we've funded Professor Steve Humphries and his research team at UCL. They're finding the genes responsible for the condition, and developing testing methods for FH. They used these testing techniques to establish a national DNA diagnostic service, which has already found many people with FH by tracing the relatives of known FH patients.

Thanks to Professor Humphries' research, genetic testing for FH is starting to be rolled out across the NHS. This ensures close family members of people diagnosed will be tested to ensure they get treatment as soon as possible if they have FH too.

Professor Peter Weissberg, our Medical Director, said: “Thirty years of BHF-funded research into this deadly genetic condition means we’ve now got the ability to identify people at high risk of a heart attack because of FH and give them treatment that could save their life.” 

How you can help

FH is one of the great success stories for BHF-funded research but we can only continue this work with your support. Please donate to help us continue funding our life saving research.