Information for patients

It is, of course, important that not only your child with FH but ALL children maintain a healthy diet, be physically active and avoid smoking, so as to minimise their future risk of heart disease.

FH is relatively easy to diagnose and finding out if you have it at a younger age is really important. Treatment works better when started early, before high levels of cholesterol can cause any damage to your blood vessels.

We have lots of information on FH for children and young people, including information booklets and factsheets for different ages.  

The FH paediatric Registry received a grant to translate these HEART UK booklets into other languages including Czech, Flemish, French, German, Greek, Spanish, Portuguese and Norwegian.

Contact us for copies

What is FH?  : An animation for children 

This animated book will give information about FH to children, from 6- to 11 years old, and their families. It tells the story of Luke and Elsie, whose mum has FH. They visit the hospital and have a blood sample taken for genetic testing. One of the children has FH but the other doesn’t. The doctor explains to them about the causes of FH, using the analogy that the LDL-Receptor is like a fishing rod that captures cholesterol from the blood stream, and if you don’t have enough fishing rods in your liver then you can’t remove enough cholesterol. The children are given advice about healthy eating and exercise, and about taking their medication.

The book shows how to draw an FH family tree and to prepare healthy food frequency charts and things you can do to keep fit. It also suggests ways to explain to class mates about FH in a “show-and-tell” format that is appropriate for different age groups.

This animated book was developed by colleagues in Holland and we thank them for allowing its translation into English. This was carried out by Phil Rowlands and Steve Humphries with colleagues from the UK Children’s FH Register, which is supported by a grant from the International Atherosclerosis Society.

Watch the cartoon

Questions about Statins

Current recommendations are that statins should be started in children with FH from the age of 8-10 years old, but this will very much depend on a child’s cholesterol result and whether there is a family history of early heart disease. 

Download a factsheet Why should my child start taking a statin?
produced by the FH Paediatric Register for more information.