Being a parent with FH - Familial Hypercholesterolaemia

If you have Familial Hypercholesterolaemia (FH) there is a one in two chance that your children will have it too, but there is no reason why they can’t live a perfectly healthy life. FH can be controlled with treatments and a healthy lifestyle to prevent health problems in the future.

Your child can have a cholesterol test to see if they have FH from the age of two. Getting diagnosed early means they can start treatment and learn about looking after their health early, before any problems develop. Your doctor will talk to you about when it’s a good time for them to start treatment.

Getting a cholesterol test

Children with FH have high cholesterol from birth, so a cholesterol check can show if they have FH.

  • If your child’s cholesterol is high, it is likely they have FH, as children don’t usually have high cholesterol.
  • If your child’s cholesterol is in the healthy range, they probably don’t have FH.
  • If your child has moderately raised cholesterol, between 5.5mmol/l and 6.7mmol/L it’s hard to know for sure if they have FH or not. Your doctor might want to do regular cholesterol tests as your child grows up.

They should have a cholesterol test as early as possible, after the age of two. It needs to be before the age of 10 because puberty can affect cholesterol levels.

Healthy living

A healthy diet and exercise are especially important for people with FH and will help any treatments to work better. Encouraging your child to learn about food and cholesterol will mean they grow up being able to look after their own health.

It’s good to make healthy changes together as a family, including any brothers and sisters. Seeing healthy role models around them will help your children develop healthy habits, and stop them feeling like they’re being treated differently.

Children have different needs to adults. If you’d like a hand in learning which foods to go for, ask your doctor to refer you to a dietitian.

Being active is essential too. Children should be active for at least an hour a day and children under five should be active for three, spread out throughout the day. See how you can encourage your child to be active. Are there any after school clubs they can join for example?

More ideas on healthy living

Getting a genetic test

Your child could also have a genetic test. If you have already had a test yourself and the faulty gene has been found, it will be easy to see if your child has the same one – as the scientists already know what to look for.

If your child has the same faulty gene, this means they have FH. If they don’t, then they don’t have FH – unless they have inherited a faulty gene from their other parent, which is possible but very unlikely.

Your GP can refer you or your child for genetic testing.

More about genetic testing

Getting treatment

If your child has FH, you and your child should see a specialist doctor in a family-friendly environment in a lipid clinic. Everyone is different, and your doctor will talk to you about the best treatments for your child. The right treatment will depend on many things, including your child’s cholesterol levels, and whether others in your family have had heart problems and how old they were at the time.

Treatment is usually with statins, which are being used more and more to treat children. Statins can be used at a very young age.

If your child has two genes for FH

People with FH usually have one faulty gene which is causing their high cholesterol. This is called heterozygous FH.

If both you and your partner have FH, it’s possible your child will inherit two faulty genes – one from you and one from your partner. This is called homozygous FH.

This type of FH raises cholesterol levels higher and, without treatment, can cause heart disease at a very young age, even in childhood. If your child has this type, it can be treated with statins and your child might need them from a young age. They might also need a treatment called LDL apheresis.

Dealing with a diagnosis

If your child has inherited FH there is no need to feel guilty – you can’t change your DNA or the genes your child inherits. If your child is diagnosed and treated for FH early, they can live a normal, healthy life. Keep in touch with your doctor and use the treatments they recommend, go for a healthy lifestyle, and they can live their life just like any other child.

It’s natural to feel worried, and if you feel you need to talk to someone, there is support available. Call our helpline to speak to our specialist nurses and dietitians, or speak to your doctor or nurse. Just talking to your friends and family can help you to feel more positive.

Booklets and videos

We have some booklets and factsheets for children and young people with FH. They talk about what it means if you have high cholesterol or FH, eating healthily, exercise and the medicines that can help.

Browse our booklets, factsheets, video and e-book

The FH Paediatric Register

A register for children with FH is being developed with the Royal College of Physicians and the Royal College of Paediatrics and Child Health. The aim of the register is to collect information about this relatively rare condition, to improve treatments in the future.

Read more about the Paediatric FH Register.