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. Treatments and a healthy lifestyle can help prevent health problems in the future.
When to get your child tested for FH
If you have FH yourself, you can discuss when to get your child tested with your lipid consultant (a specialist in blood fats). Getting tested and diagnosed early means your child can start treatment and learn about a healthy lifestyle before any problems develop.
The current national guidelines recommend that a child who has a parent with a confirmed diagnosis of FH should be tested at the earliest opportunity, and if possible before they are 10 years old. This will be with a genetic test looking for the same FH gene that the parent has. Your specialist will be able to help you with this.
Children who are diagnosed with FH will be looked after by a specialist who is an expert in FH in children and young people. This will be in a setting which is focused on young people.
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. Your lipid specialist will normally refer you to see a dietitian as per current national guidelines to help support you with this.
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?
Getting a genetic test
If you have already had a genetic test yourself and a faulty gene for FH 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 will not have FH – unless they have inherited a faulty gene from their other parent, which is possible but very unlikely.
Your GP can refer you and your child to a lipid clinic for genetic testing.
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 specialist 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.
Any medication will be under the care and supervision of your specialist doctor. Statins are usually the first line of treatment.
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, and encourage a healthy lifestyle too, and your child 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 Cholesterol 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.
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.