FindFH. Save a Life.

FH is an inherited condition passed down generations in a faulty gene that causes the body to process cholesterol less efficiently. Over time, too much cholesterol can build up and damage the arteries which can lead to a heart attack or stroke. People with FH are at a much higher risk.


A heart attack or stroke can be avoided and the risk reduced with straightforward treatment. The sooner that someone knows they have FH the better.

Finding children with high cholesterol is very important because it may mean that they have FH. If a child has FH so too will one or both parent and maybe older brothers and sisters, uncles, aunties and other family members. Treatment for FH can start at a very young age and doesn’t necessarily mean medicines for children and can be healthier eating and getting more active.

The HEART UK FindFH. Save a Life campaign is about finding and treating people with FH. Finding and treating more children will not only help them live a fit and healthy life, but may save the life of a parent and other family member.

Our campaign to screen children for FH is getting discussed at the UK National Screening Committee on 26th February. We have all the evidence that screening children for FH works, all the experts that say it can work and the families that have lost children saying that the NHS must do it.

Please help this campaign so we can FindFH.

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It is estimated that there are over 56,000 children with FH. It is the most common genetic condition but the NHS has a record of only treating 600 children.

Gill Barton James, 58, from Colchester in Essex lost her daughter Katie to FH in June 2011 when Katie was only 21. Katie left behind her husband of just nine months and their baby daughter, Abi-Evelyn. Subsequently 36 members of the family were tested for FH, the biggest family to ever have been tested, and 16 of those were positive, including Gill.

Their diagnoses mean that they can have medication, such as statins, to keep their cholesterol down, have regular check-ups and know to eat well and stay active. Gill describes it as a ‘double-edged sword’ – she has lost her beloved daughter, but it has given the whole family knowledge so that they can take steps to never have the pain of losing another family member at such a young age.

Katie’s daughter, Abi, turned 10 in December last year and will start on statins around the age of 11 or 12 depending on her cholesterol levels.

Gill is passionate about raising awareness of the condition, so other families don’t experience the tragedy of what hers has been through. She said: “Katie had a really strong sense of purpose. I’d know that she would want us to be talking about this and saving lives.”