The Family Heart Foundation aims to change that by establishing the first Lipoprotein(a) Awareness Day, on March 24. Lipoprotein(a), sometimes called “little a,” or Lp(a) for short, is an important genetic risk factor for heart disease. Lipoproteins are proteins found in the body that carry cholesterol through the blood. Research shows that high levels of Lp(a) are associated with a higher risk of aortic stenosis (narrowing of the aortic valve), heart attack, and stroke. “Elevated levels of Lp(a) increase the risk of inflammation, blood clotting and clogging, or plaque buildup, inside your blood vessels, which can block the flow of blood and oxygen to your heart or brain,” says Mary McGowan, MD, the Family Heart Foundation’s chief medical officer. “That’s what causes a heart attack or stroke.”

How Do You Know if You Have High Lp(a) Levels?

Lp(a) levels are inherited and are unrelated to diet, exercise, obesity, or lifestyle. Guidelines vary when it comes to cutoff points for high Lp(a) levels, according to the American College of Cardiology, but evidence suggests individuals with Lp(a) levels greater than 50 milligrams per deciliter (mg/dL) or 100 nanomoles per liter (100 nmol/L), have an increased risk of heart attack and stroke. Some research, published in the Journal of Clinical Lipidology in 2019, suggests the threshold may be even lower, at 30 mg/dL. About one in five people around the world have inherited high Lp(a), Dr. McGowan notes, but very few people know it. “Almost everyone gets tested for high cholesterol, but in the U.S., fewer than 1 percent are screened for Lp(a),” she says. “People might be surprised to know that this test is not part of a standard blood test that provides their cholesterol levels.” A doctor can order the test directly. There are also usually no symptoms associated with high levels of Lp(a). “Elevated Lp(a) is practically invisible,” McGowan says. “Often, the first sign of this condition is a stroke or a heart attack.” Katherine Wilemon knows that all too well. At the age of 39, her life changed forever when she had a heart attack caused by a complete artery blockage. A healthy new mom, Wilemon at first had trouble getting the urgent care she needed. “Everyone I encountered from the moment I called 911 with crushing chest pain had a preconceived idea who might be having a heart attack,” she says. “I was younger than 60, not a male, and in shape, therefore they had a hard time believing what was happening to me. I was at grave risk of not even getting the emergency care I needed because of how strong the generalizations about heart disease were in the medical community.” She later learned she had two genetic conditions that increased her risk of heart disease: familial hypercholesterolemia (a genetic defect that affects the body’s ability to remove LDL, or “bad” cholesterol) and elevated Lp(a).

The Need for Awareness of the Genetic Risk of Heart Disease

Wilemon quickly sprang into action and took her health into her own hands. “I felt let down by the health system,” she says. “My doctors knew that heart disease ran in my family. Almost four decades of time to manage my condition was lost and with it the chance to prevent my heart attack. For many, the first heart attack is the last.” She founded the Family Heart Foundation in 2011 to advocate for herself and others like her who are at an increased genetic risk of heart disease. “The Family Heart Foundation wants to help those at risk get the information they need to protect themselves and their families,” Wilemon says. One of the ways it’s doing that is by establishing the first annual Lipoprotein(a) Awareness Day on March 24 to raise awareness of Lp(a) worldwide. “With Lp(a) Awareness Day, we want to reach more people who know that early heart disease and strokes run in their family but who’ve never been told why,” Wilemon said. “We want to urge everyone to understand their own risk for cardiovascular disease, because it continues to be the single biggest cause of illness and death.” McGowan urges anyone who is concerned about their genetic risk of heart disease to talk to their doctor and ask for a blood test for Lp(a). While having a high Lp(a) is not curable, there are things you can do to minimize all your other heart risk factors, such as eating a heart healthy diet and exercising at least 30 minutes most days, she notes. “In addition, quit smoking, and make sure your blood pressure, blood sugar, and cholesterol levels are all well controlled,” McGowan says. “In people with elevated Lp(a) we typically try to lower the LDL or bad cholesterol to less than 100 mg/dL, and even lower is better.”

How to Take Part in Lipoprotein(a) Awareness Day

The Family Heart Foundation invites everyone to spread the word about Lipoprotein(a) Awareness Day on March 24. One way to do this is by downloading and sharing premade social media posts with facts about Lp(a) on your Instagram, Facebook, or Twitter. The organization will also be hosting a Tweet-a-Thon on March 24 at 11:30 a.m. EDT and 8:30 a.m. PDT on Twitter. A panel of experts will be on hand to lead a discussion about topics related to Lp(a). All are encouraged to join, ask questions, and share their personal stories. The hashtag to participate in the Tweet-a-Thon is #KnowLpa.