“After the shock of having a heart attack at age 39, I was a new mom at home with an infant, trying to make sense of being both a new parent and a heart disease patient”. Katherine Wilemon had known since age 15 that she had high LDL (“bad”) cholesterol, but years later was diagnosed with a cholesterol disorder called familial hypercholesterolemia (FH), and then with elevated levels of another fatty particle in the blood called lipoprotein(a) – Said out loud, this is called “LP-little-(a).
One in five people worldwide have the same cardiac risk factor that Katherine had. Dr. Henry Ginsberg at Columbia University, a leading expert on lipoprotein(a), explained in the New York Times: (“A Heart Risk Factor Even Doctors Don’t Know About”):
“People don’t know about it, physicians don’t know about it.” .
Most of us can live a long and happy life not ever thinking about low levels of LP(a) in our blood. A high level of LP(a), however, can quadruple our risk of a heart attack or stroke. How high is too high? Dr. Ginsberg tells us that LP(a) levels between 150 and 300 milligrams per deciliter of blood are dangerous, adding: “Those people can be disasters in terms of cardiovascular risk.”
LP(a) is a lot like that “bad” LDL cholesterol – but it’s more ‘sticky’.
High LP(a) is hereditary, meaning that those who have this genetic marker often have a known family history of relatives (a parent, sibling, grandparent, or child) who experienced heart attack or stroke diagnosed at an unusually young age, often before age 50. If one person in the family has LP(a), other close family members must be tested, too. Katherine Wilemon adds:
“It turns out that I passed these mutations down to one of my daughters.”
Katherine’s first heart attack symptoms were dismissed as heartburn by her doctor, despite Wilemon’s history of high LDL cholesterol, as she explained in an EveryDay Health article. Even at the hospital later on, she was met with “a familiar lack of urgency”, and was sent home. She went back to her doctor the next day when cardiac symptoms worsened, but he told her it was just anxiety.
“I told him that of course I was anxious! I knew that something was wrong with my heart, and that I was terrified I might be having a heart attack. I said I would not leave his office until he could guarantee me that my heart was okay, and that I was not in danger.”
Her doctor “begrudgingly” ordered a treadmill stress test – which was abruptly stopped when clinic staff saw her alarming results. Katherine was having what doctors call a widow maker heart attack. She was rushed to the hospital’s cath lab, where a coronary stent was implanted in her left anterior descending coronary artery. The cardiologist told 39-year old Katherine that she had “the arteries of a 70-year-old.” Her dramatic experience ultimately inspired her to establish the Family Heart Foundation.
Cholesterol travels through the blood on lipoproteins, which are made of protein and fat. Once heart patients are initially diagnosed, we all undergo routine blood tests to check our LDL (bad) cholesterol and our HDL (good) cholesterol numbers (among other blood fats) because these test results can indicate high risk for plaque blockages in our coronary arteries.
Plaques can either grow over time or suddenly rupture, blocking blood vessels and leading to heart attacks or strokes.1 LP(a) also promotes inflammation, which can increase the likelihood that coronary artery plaques will rupture.
But few if any of us heart patients will be routinely tested for LP(a) – even though a high levels of LP(a) are known to cause up to four times greater risk of heart disease.
According to the CDC, LP(a) is seen in people of all races and ethnicities, but appears to be more common among Black people.2 Many with high LP(a) experience no symptoms. However, your doctor may suspect that you have high LP(a) if you have any of the following risk factors:
- Poor circulation in your legs (called peripheral arterial disease)
- Heart attack, stroke or coronary artery disease before age 55 in men or age 65 in women without known risk factors, such as high LDL cholesterol, smoking, high blood pressure, diabetes, a sedentary lifestyle or obesity
- Female family members who had a heart attack or stroke before age 65
- Male family members who had a heart attack or stroke before age 55
- Familial hypercholesterolemia
- Certain types of aortic stenosis
How is LP(a) treated?
LP(a) advocates recommend that every one of us should routinely get at least one lab test for LP(a).
There are few accepted treatments for LP(a) other than reducing risk factors that we know increase our chances of heart disease (e.g. smoking, obesity, high blood pressure, sedentary lifestyle, high LDL cholesterol, etc.)
Lipoprotein apheresis. This is a weekly or bi-weekly clinic treatment (similar to kidney dialysis). Apheresis treatments can help to reduce LP(a) levels by up to 75%. But this treatment is not available in every hospital, and is not recommended for certain patients.
Learn more about potential drug treatments from the LP(a) Care Foundation, a research charity founded by Dr. Christian Schrock, who believes that statins are not effective in lowering LP(a), and that other cholesterol drugs called PCSK-9 inhibitors (e.g. Praluent or Repatha) may show promise.
But before any treatment can be decided, you need a diagnosis.
The first clue that you might unknowingly carry this gene is your own family history. If you’ve had a close relative (parent, grandparent, sibling or child) who has experienced heart disease at an unusually young age (under 55 in men, under 65 in women), request a specific LP(a) blood test from your doctor.
And as Katherine Wilemon observed:
“I saw that this problem came long before people got sick, therefore we need to be engaging healthcare professionals as much as we need to be engaging patients.”
1. Reyes-Soffer G, Ginsberg HN, Berglund L, Duell PB, Heffron SP, Kamstrup PR, et al. “Lipoprotein(a): A Genetically Determined, Causal, and Prevalent Risk Factor for Atherosclerotic Cardiovascular Disease: A Scientific Statement From the American Heart Association.” Arterioscler Thromb Vasc Biol 2022; 42(1):e48-e60.
2. Patel AP, Wang M, Pirruccello JP, Ellinor PT, Ng K, Kathiresan S, Khera AV. “Lp(a) (Lipoprotein[a]) Concentrations and Incident Atherosclerotic Cardiovascular Disease.” Arteriosclerosis, Thrombosis, and Vascular Biology 2021;41:465–474.
* Photo: Family Heart Foundation
NOTE FROM CAROLYN: I wrote more about common (and uncommon) cardiac risk factors in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
For more information on LP(a) see:
– “What is High Lipoprotein(a)?” – one-hour webinar from Heart UK
– Family Heart Foundation – a non-profit that supports research and education on LP(a) and Familial Hypercholesterolemia (FH). This organization was founded by Katherine Wilemon in 2011 after her heart attack at age 39. The Foundation has a national registry of almost 6,500 FH patients so far in 40 centres around the U.S., a useful Find a Specialist page, plus a Care Navigation Center to help newly diagnosed patients.
– LP(a) Care Foundation was founded by Dr. Christian Shrock after his own healthy, athletic 41-year old son had a near-fatal heart attack in 2016 (all three of his coronary arteries were blocked despite his “normal” cholesterol test results) – finally correctly diagnosed as LP(a). His Dad’s Foundation raises awareness, encourages screening tests, and raises funds to support LP(a) research. Watch this 7:5 minute video