Inherited cholesterol facts
  • People with familial hypercholesterolemia (FH) are at greater rish of heart disease
  • At least 1 in 500 people are believed to have FH but may be more as in other European countries
  • Of the 120,000 people in the UK with FH only 15% – less than 1 in 5, know they have the condition
  • At least 28,000 children in the UK have FH but only 600 of these are known
Get in touch (get involved)
Get in touch

Have any enquiries about getting involved with HEART UK? Get in touch with our Development Office on 01628 777 046 or email us at development@heartuk.org.uk

Familial Hypercholesterolaemia Sanofi Booklet
Inherited Cholesterol Guide

Download our easy to read pictorial guide to Familial Hypercholesterolemia. Find out more about inherited high cholesterol.  

Treatment for People with Familial Hypercholesterolaemia (FH)

Most of the people who have been diagnosed with the inherited genetic high cholesterol condition Familial Hypercholesterolemia​ (FH) are offered a combination of a medicine, called a statin, and guidance and support to improve their diet and lifestyle. If you have just been diagnosed with FH, your doctor should discuss the options for treatment with you.  Ideally you should be referred to a specialist who is an expert in treating people with FH.  You will usually be seen in a “lipid clinic” as an outpatient.

Medicines

Most adults are prescribed a high potency statin such as Rosuvastatin or Atorvastatin.  These medicines are very effective at lowering LDL cholesterol and at preventing heart disease.  Statins are generally safe, well tolerated and are widely used.  Treatment is usually lifelong.  The aim is to reduce your LDL cholesterol level by at least half or more.

Watch ​►​ Prof Steve Humphries, Professor of Cardio Vascular Genetics at University College in London, discuss how statin treatment can very significantly extend life expectancy.

Prof Steve Humphries, Professor of Cardio Vascular Genetics at University College in London, discusses how statin treatment can very significantly extend life expectancy

Statins work by blocking an enzyme in the liver which is needed to produce cholesterol.  Because your liver is making less cholesterol it will try and collect more cholesterol from the circulation.  This causes your LDL cholesterol level to drop.   You can find out more about how statins work in our Familial Hypercholesterolemia educational booklet.  You can get your own copy of this useful booklet by calling or emailing our Cholesterol Helpline

Occasionally, another medicine such as ezetimibe, a resin or a fibrate might be prescribed either alongside of or instead of a statin.

Healthy Diet

It is important to be given support and guidance by a dietitian or another health professional with expertise in nutrition.  All the family can benefit by following the same healthy routine.  You can find out more about the type of diet that is recommended by visiting our cholesterol and diet pages.  The Ultimate Cholesterol Lowering Plan (UCLP) is HEART UK's very own cholesterol lowering diet.   

Healthy Lifestyle

People with FH are encouraged not to smoke, to be physically active, to keep their alcohol intake within recommended levels and to achieve and maintain a healthy weight.

LDL Apheresis

A few people with FH might be offered LDL apheresis.  This is a procedure where the blood is regularly cleaned of cholesterol by passing it through a machine.  It is a bit like kidney dialysis.  Each treatment involves being in hospital for about 4 hours and the treatment usually needs repeating every 2 weeks.  

There are only a few units across the country that can offer LDL apheresis.  Typically it is offered to patients whose cholesterol levels cannot easily be controlled by medicines and lifestyle alone. 

How often will I need to see my doctor?

When you are first diagnosed you may need to see your doctor quite often to check if your treatment is working.   Afterwards your doctor will probably want to review your treatment about once a year.       

Fundraising Help Pack
Fundraising Help Pack

Our Fundraising Help Pack is full of advice and tips, to request a copy email Fundraising or call 01628 777 046

UCLP Resources

We have resources for both health professionals and their patients.

You can download the UCLP©​ leaflet or contact the HEART UK helpline for additional copies (ask@heartuk.org.uk) or tel 0345 450 5988      

All our other UCLP© resources are online/downloadable from these pages: UCLP resources, Health professional resources and publications, Joint activities/UCLP©

Movie - Ellen’s story

Listen to Ellen Coker and how she overcame her challenges.