About LEEFH
The LEEFH Foundation provides support for FH family screening. We collaborate through a network of 39 hospitals (LEEFH Centers) throughout the Netherlands.
We share knowledge and expertise to prevent cardiovascular disease. The Dutch Heart Foundation supports our activities with annual sponsorship.
Frequently Asked Questions
We get these questions more often
What does FH mean in everyday life?
How is FH diagnosed?
Do you feel FH in everyday life?
When is genetic testing advisable?
What does FH mean in everyday life?
How is FH diagnosed?
Do you feel FH in everyday life?
When is genetic testing advisable?
Subtitle
FH means that you "naturally" have higher than average LDL cholesterol, because it is in your genes. In daily life, you often don't notice much of this: you go to work or school, play sports, eat, live like everyone else. The difference is mainly in what happens behind the scenes: you go for blood tests more often, usually take daily medication and pay extra attention to things like smoking, diet and exercise. It sometimes takes some planning (e.g. don't forget medication on vacation), but with good treatment you can live a very normal life.
Subtitle
FH means that you "naturally" have higher than average LDL cholesterol, because it is in your genes. In daily life, you often don't notice much of this: you go to work or school, play sports, eat, live like everyone else. The difference is mainly in what happens behind the scenes: you go for blood tests more often, usually take daily medication and pay extra attention to things like smoking, diet and exercise. It sometimes takes some planning (e.g. don't forget medication on vacation), but with good treatment you can live a very normal life.
Diagnosis
It starts with a suspicion of FH in,
- significantly elevated LDL cholesterol;
- early cardiovascular disease in the patient or family;
- physical characteristics such as tendon xanthomas (fat deposits in tendons) and arcus lipoides (fat ring around the cornea);
- Genetically proven FH in a family member.
A definitive diagnosis can be made through DNA testing, which searches for the defect (disease-causing genetic variant) in genes such as LDLR, APOB, or PCSK9. This test is requested in consultation with a physician or general practioner.
Subtitle
FH itself usually doesn't cause any noticeable symptoms. High cholesterol doesn't hurt and doesn't give you immediate problems. This is exactly what makes FH tricky: you can feel perfectly healthy, but your blood vessels can get damaged faster if you don't get treatment. Many people say: 'I would never have known I had FH without a blood test.' That's why family screening is important, so family members can do something about it early in life.
Subtitle
Testing is wise if:
- FH runs in your family (e.g., a parent, brother/sister, uncle/aunt with FH).
- In your family occur at a young age of heart or vascular disease (before 60), such as myocardial infarction or angioplasty.
- You yourself have unusually high LDL cholesterol, especially if you are young.
In all these situations, it's wise to talk to your doctor (GP) about further tests. This often starts with a cholesterol test, and DNA testing can then follow to confirm FH. The sooner FH is found, the better you can protect your heart and blood vessels for the future.
LEEFH Centers
Find a LEEFH center near you
Anyone (and their family) who suspects they may have FH can visit a regional LEEFH center. We advise general practitioners to refer their patients to an FH center of expertise once an FH mutation has been found or FH is suspected. The hospital's FH consultant will coordinate the diagnosis, DNA testing, any treatment, and family testing together with a medical specialist.
Find a LEEFH center
