When You Have Both: Managing FH and High Lp(a)

When You Have Both: Managing FH and High Lp(a)

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 peopleElevated Lp(a) occurs in every 1 in 5 people
80% of people with FH go undiagnosed99% 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.

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