March 24th was the first ever Lipoprotein(a) Awareness Day, and my conversations about it went something like this:
Me: Did you know today is Lp(a) Awareness Day?
Friend: What’s that?
Me: Elevated Lp(a) is a common genetic cholesterol disorder that I have.
Friend: Wait. I thought you had FH?
Me: I do, but I recently found out I also have high Lp(a).
Friend: So what does that mean?
Familial Hypercholesterolemia
I was diagnosed with familial hypercholesterolemia (FH) in 2009. I was one of the lucky ones that had a primary care visit where the doctor spotted the signs.
FH is a common, life threatening, genetic condition that leads to high amounts of low-density lipoprotein (LDL). You may know LDL as the “bad cholesterol.” If left untreated, FH leads to early heart attacks and heart disease.
Since my diagnosis I have been on several statins, a bile acid sequestrant, niacin, ezetimibe, bempedoic acid, and a psck9 inhibitor. After a lot of trial and error, I’m using a combination of some those treatments today and working with a lipid specialist (found through the Family Heart Foundation) to monitor my levels.
Elevated Lipoprotein(a)
As a Family Heart Foundation Advocate for Awareness, I started hearing more and more about people concerned with their lipoprotein(a), or Lp(a), levels. This led me to ask my lipid specialist to have my levels tested. I was 33.
My levels came back high… like really high. Suddenly, the anxiety that had subsided at my low LDL levels was back.
Lp(a) levels are inherited – meaning it’s genetic and unrelated to diet, exercise, and other lifestyle factors. It’s an independent risk factor for heart disease and there’s very little I can do about it.
As someone with both FH and high Lp(a), I have both risk factors for heart disease.
Familial Hypercholesterolemia |
Elevated Lipoprotein(a) |
| FH occurs in every 1 in 250 people | Elevated Lp(a) occurs in every 1 in 5 people |
| 80% of people with FH go undiagnosed | 99% of people with elevated Lp(a) go undiagnosed |
| The risk of early heart disease in individuals with FH is 20 times higher than the general population. | The risk of early heart disease in individuals with elevated Lp(a) is 2-4 times higher than the general population. |
| Research shows 30%-50% of people with FH also have elevated Lp(a) |
Knowing You Have Both FH and High Lp(a)
Knowing you have two genetic conditions that can lead to early heart disease is not an easy thing to live with. I have days where I feel invincible, and I have days where I feel like a ticking time bomb.
But one way to ease my anxieties is knowing I’m taking every step possible to take my health in my own hands.
Luckily, I live in a time where multiple LDL lowering medications are available. In 1966, when my grandfather had his fatal heart attack at 30 years old, there weren’t even statins. I know taking my medicine and regularly seeing my lipid specialist gives me an advantage previous generations didn’t have.
Since there are currently no Lp(a)-lowering medications, I continue to keep ally my other risk factors in control. I stay up to date on the latest research through the Family Heart Foundation forums and conversations with my lipid specialist.
I also don’t smoke, maintain a balanced diet, and enjoy an active lifestyle – anything I can do to care for my body and keep my heart healthy.
And I’ve marked both Lp(a) Awareness Day (March 24) and FH Awareness Day (September 24) on my calendar.