HF 7466

Familial Hypercholesterolemia (FH) in Children

Familial hypercholesterolemia (FH) is a genetic disorder. It causes very high levels of blood cholesterol. If someone is found to have FH, their parents, siblings, and children should also have their cholesterol checked. Children with FH often have other family members with high cholesterol, early heart disease, or heart attacks.

What causes FH?

FH is caused by changes in a gene that lowers the body’s ability to remove low-density lipoprotein (LDL), the “bad,” cholesterol from the blood. This makes the levels of LDL very high. In most types of FH, a parent with FH has a 50% chance of passing the gene to their child.

For most people without FH, high LDL levels are caused by eating a diet that is high in saturated fat, being overweight, having diabetes, or not getting enough exercise. Children with FH can have a good diet, exercise enough, and still have a high LDL level.

Why is FH a problem for my child?

FH causes rapid buildup of plaque in the arteries, often starting before 10 years of age. Over time, this buildup can block the arteries and cause early heart disease, heart attacks or strokes. If not treated, people with FH have an increased risk for early heart disease. In half of men and 1 in 4 women with FH, these heart issues start by age 50.

How is FH diagnosed?

In children, FH is a “silent” disease and causes no symptoms. The only way to diagnose FH is with a blood test. All children should have their cholesterol levels checked between 9-11 years of age. If treated at an early age it can help stop build up, reduce plaque and reduce the risk for future heart disease.


Eating a healthy diet low in saturated fat and cholesterol can lower LDL. For most children with FH, this is often not enough. Your child will likely need to also take medicine to lower their LDL. Most children need to take this medicine for the rest of their lives.

What kind of medicine is used to treat FH?

The most common medicines that lower cholesterol are called statins. They help to decrease the amount of cholesterol made in the liver. Statins are often used to treat adults with high cholesterol. Statins cannot be taken when pregnant because they may cause birth defects to the unborn baby. If your child takes a statin, they will need frequent blood tests. Some children with FH need more than one type of medicine. This will be discussed with your child’s doctor.

Websites to Learn More About FH

The FH Foundation



Patient information from the National Lipid Association: