Family Sharing

Learning that you have familial hypercholesterolemia (FH) or elevated Lipoprotein(a) can be a lot to take in. Your diagnosis in not just “your diagnosis.” It is, simply put, your entire family’s diagnosis.

For both FH and high Lp(a), they are dominantly inherited disorders. This means if one person has it, each time they have a child there is a 50% chance they will pass the condition on to that child. So, if you have FH or high Lp(a), roughly half of your first-degree relatives (parents, siblings, and children) will also have FH or high Lp(a). This is why we always say:

 

“You never find a person with FH or high Lp(a) – you find a family.”

 

When someone is diagnosed with FH or high Lp(a), it is recommended that all first-degree family members are also screened as well. This process is known as Cascade Family Screening. It doesn’t stop with first degree relatives. If one of your siblings, for example, has FH or high Lp(a), it is recommended that their children are also tested, and so on. This is an effective way to protect your entire family.

Whether your family is tight-knit or rarely in touch with each other, you are bound together by your genetics. Communicating with your family about having FH or high Lp(a) isn’t easy no matter what your relationship is. For some people, sitting down face to face for a discussion is the best approach. For others sending a text, email or letter is better. The most important thing is to provide your family members with accurate information about FH or high Lp(a) so they can make decisions about their own health.

The Family Heart Foundation has created these resources that you can edit and use to communicate with your family member: