For years, high cholesterol has been simplified into a lifestyle problem. People are told to eat better, move more, and their numbers should fall in line. That advice is everywhere. But for many families within our community, the story isn’t that simple. Beneath the surface of heart-healthy tips lies a genetic condition called familial hypercholesterolemia (FH) that pushes LDL cholesterol to dangerous levels from childhood. It’s more common than most realize, yet rarely named in clinical settings, conversations, or community health efforts.
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What Is Familial Hypercholesterolemia?
Familial hypercholesterolemia (FH) is one of the most common inherited conditions in the United States, affecting roughly 1 in 250 adults, according to the Centers for Disease Control and Prevention. Unlike traditional high cholesterol, FH begins at birth and causes dangerously elevated LDL (low-density lipoprotein) levels that clog arteries early and aggressively.
What Is LDL and Why Is It Called “Bad”?
LDL stands for low-density lipoprotein, which is a type of particle that carries cholesterol through your bloodstream. Cholesterol itself isn’t all bad; it helps build cells and produce hormones. But LDL carries more cholesterol than your body needs, and when there’s too much, it starts to stick to the walls of your arteries.
Over time, this buildup forms plaque, which narrows the arteries and makes it harder for blood to flow. That’s how LDL contributes to heart attacks, strokes, and other cardiovascular problems. It’s not “bad” because of what it is, it’s “bad” because of what it does when it’s out of balance.
The American College of Cardiology recommends that individuals without heart disease aim for LDL levels of 100 mg/dL or lower. For those at high risk, including people with FH, they suggest even lower targets:
- Under 70 mg/dL for individuals with prior cardiovascular events.
- Under 55 mg/dL for those at very high risk.
Our Community is Living the Consequences
Research continues to show that FH outcomes differ sharply across racial groups. Black Americans, in particular, are underdiagnosed and undertreated, leading to a higher risk of severe outcomes like heart attacks and stroke.
A recent study published in the Journal of the American Heart Association found that only 61% of Black patients with FH are prescribed cholesterol-lowering medications, compared to 73% of white patients. That disparity matters, and unfortunately, cholesterol doesn’t wait for equity.
The same study highlighted additional challenges:
- 82% of Black adults with FH also have high blood pressure (vs. 50% of white patients).
- 39% live with diabetes (compared to 15%).
- 16% are current smokers, nearly double that of their white counterparts.
A Larger Pattern of Risk
High cholesterol is one thread in a much larger fabric of cardiovascular risk in our community. The American Heart Association’s 2025 Statistical Update reveals that:
- Almost 60% of Black adults live with some form of cardiovascular disease.
- Over half of all heart failure hospitalizations in adults under 50 involve Black patients.
- Stroke rates are highest among Black men and women, with 5.4% of Black women and 4.8% of Black men affected.
It’s not that these numbers are inevitable; it’s that FH isn’t being caught early, and many providers still rely solely on lifestyle assumptions instead of screening for genetics.
Kids Are Being Missed Too
FH doesn’t just show up in adulthood; it’s there from the start. The CDC recommends screening children between the ages of nine and 11 if there’s a family history of early heart disease or cholesterol issues. But only 30% of kids born with FH are diagnosed early, and for Black children, the delays are even longer.
When a parent has FH, each child has a 50% chance of inheriting it. That means genetic testing and early cholesterol panels should be routine, but they’re not.
Getting the Right Treatment Isn’t Always Easy
For most people with high cholesterol, doctors prescribe statins, medications that help lower those numbers and reduce the risk of heart problems. But when cholesterol stays high because of a genetic condition like FH, statins often aren’t enough.
That’s where newer treatments come in. Medications like Praluent and Repatha are part of a group called PCSK9 inhibitors. They’re designed to help the body remove stubborn LDL cholesterol, the kind that clogs arteries even when people eat healthy and exercise. These drugs can make a real difference for people with FH, but without a confirmed case of FH, especially through genetic testing, doctors often won’t prescribe them. And that’s where the gap widens.
A 2025 study published in The American Journal of Human Genetics found that only 27.7% of Black patients received a documented genetic diagnosis, compared to 63.1% of white patients, suggesting that our community is routinely overlooked for the very testing that opens the door to these advanced medications.
Breaking the Cycle
Familial hypercholesterolemia (FH) is often overlooked, especially in Black communities, where delays in diagnosis are common and access to advanced treatment is inconsistent. Knowing your numbers and being proactive can make a real difference. Here’s where to begin:
- Getting a full lipid panel, including LDL, HDL, triglycerides, and, if available, apolipoprotein B.
- Asking about FH directly, not all providers bring it up.
- Encourage your family to get screened, especially younger relatives.
- Pushing for genetic testing if cholesterol levels are high, even with a healthy lifestyle.
The silence surrounding FH isn’t solely a medical issue; it’s systemic. And it’s time to name it, track it, and treat it with the urgency it deserves. Your numbers matter. Your family history matters. And your voice in the exam room can change everything.
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