Talking to Your Family about Your Familial Hypercholesterolemia Diagnosis

Why talk about it

Your family members may benefit from knowing about your diagnosis of familial hypercholesterolemia (FH). Talk to your family about FH, and tell them:

• FH is passed through families
• FH causes higher blood cholesterol levels starting from birth
• If they have FH, they are more likely to have coronary artery disease or a heart attack at a younger age
• They should talk to their healthcare provider about getting checked for FH
• If you have had genetic testing and have a known FH genetic change, they should be tested for the same genetic change if they decide to have genetic testing
• If they have FH, they can take steps to prevent coronary artery disease

How do I talk to my family about my FH diagnosis?

• WHO: Your parents, sisters, brothers, and children are the family members most likely to have FH (50% or 1 in 2 chance). Other blood relatives, such as aunts, uncles, nieces, nephews, and cousins, are also likely to have FH. Your healthcare provider or genetic counselor can help you figure out who in your family could have FH and benefit from learning about your diagnosis.
• WHAT: You can share your results from your lipid panel (a test that measures the amount of cholesterol in your blood); genetic testing results (if any); letters from your healthcare provider, lipid specialist, or genetic counselor; and other information you received about your diagnosis with your family. Telling your family members about your specific genetic change, if known, helps their healthcare provider know exactly which test to use and might help save your family money.
• HOW: If you need extra support talking to your family, bring a friend. You can also ask a family member to attend your next medical appointment with you. You can also fill out this sample letter and send it to your family.

Common challenges

How do I talk to my children?

If you have FH, each of your children has a 1 in 2 (50%) chance of having FH. Getting checked for FH, including lipid screening, is recommended for your children. If your FH genetic change is known and your children have genetic testing, they should be tested for your genetic change. If your child is diagnosed with FH, statin therapy in childhood may be required, often starting by age 8-10.

Like adults, children with FH cannot manage their cholesterol levels with a healthy diet and exercise alone. Talk to your children about making it a habit to take their medicine as directed. You can also establish healthy habits as a family to make sure that you and your children develop healthy routines for the future. These can include cooking healthy meals and exercising together.

What if my family does not want to talk?

Talking to some family members about FH might not be easy. Some may be unsure of why they need to know this information. Others may be nervous about receiving a diagnosis of FH.

Remember that family members need to make their own choices about getting tested, whether or not you agree with their decisions. If family members do not want to discuss FH, respect their wishes. Let them know you are available to talk if they have questions and provide them with places to find information.

When family members do not want to talk about FH, you may feel upset or alone. Seek support from friends, healthcare providers, other family members, people you know with FH, or support groups.