An estimated 1.3 million people across the United States, and 30 million people globally, live with familial hypercholesterolemia (FH). This rare inherited form of high low-density lipoprotein (LDL) cholesterol remains heavily underdiagnosed. Almost 70% of people with FH are believed to not know that they have this condition.

September 24 marks FH Awareness Day. First established by the Family Heart Foundation, a Patient Worthy partner, 11 years ago, FH Awareness Day is designed to increase awareness around FH, highlight the need for improved diagnostic criteria, and educate people—within and beyond the FH community—about this condition. 

The Family Heart Foundation notes that FH heavily increases the risk of heart attack, stroke, heart disease, and early mortality. Through early diagnosis and treatment, the risk of heart disease falls by 80%. 

This FH Awareness Day, let’s help people to #KnowFH and increase an understanding of familial hypercholesterolemia. Check out some ideas below on how you can get involved.

Options to Raise Awareness

So you want to get involved for FH Awareness Day—but aren’t sure where to start. No worries! Patient Worthy, and the Family Heart Foundation, have some ideas for you:

• Share/engage on social media. If you have FH, head to social media (if you’re comfortable!) to share your story. This is a great way to highlight the diversity of lived experiences associated with this condition. Even if you don’t have FH, consider sharing some information or facts about FH on your social media pages. The Family Heart Foundation offers a wealth of resources and posts that you can use.
• Reach out to local media sources. Another way to raise awareness is to contact your local radio or TV station and ask them to run a story about FH. This could be a story about someone in your community with FH, an informational piece, or even about research being done within this sphere.
• Donate. You can donate money to the Family Heart Foundation or even start your own fundraiser! These funds are valuable in supporting families or advancing research.

About Familial Hypercholesterolemia (FH)

Cholesterol is a naturally occurring substance that your body creates when you eat animal-based food; this substance helps to digest fat, create certain hormones, or strengthen cell membranes. When your body has too much cholesterol, however, it can cause many health issues. People with FH don’t have enough receptors in their bloodstream to remove that extra cholesterol. This results from LDLR, APOB, LDLRAP1, or PCSK9 mutations. Unlike “regular” high cholesterol, FH does not typically respond well to standard treatments like statins. FH can be homozygous or heterozygous; at least one treatment was approved within the last year or two to treat homozygous familial hypercholesterolemia. Learn more about FH treatments.

Familial hypercholesterolemia affects around 1 in every 500 people. It can lead to heart attacks at a young age, with 20% of heart attacks under 45 being attributed to this cause. Additional symptoms of familial hypercholesterolemia can include coronary artery disease, xanthelasmatas (yellowish collections of cholesterol buildup under the eyelids), and xanthomas (yellow collections of cholesterol in the hands, fingers, and Achilles heel).

If you need help navigating your FH journey, consider reaching out the Family Heart Foundation’s Care Navigation Center.