Brandon Wilson had his first heart attack at 29.
“One day I just woke up and said, ‘I don’t feel right.’”
He’d had chest pain before, but not like this.
“It was on a level that I can only describe as some of the worst pain I’ve ever had in my life.”
In the emergency room, doctors and nurses gave him pain medicine that didn’t help, while his mother and his best friend urged the staff to consider his health history: Wilson found out that he had genetic high cholesterol as a child, and his late father had heart attacks at a young age.
Eventually, the ER staff ran a test that found that Wilson’s left anterior descending artery was 99% blocked. He was having a massive heart attack.
That was in 2015. Two more heart attacks followed, including one in 2020 that led to Wilson getting quadruple bypass surgery. Today, this husband and father of five speaks out about the reason for his health troubles: familial hypercholesterolemia (FH), a disorder that runs in families and brings on high cholesterol.
“I really take it personally to help people,” he says. “Then they won’t have to share the same story that I’m sharing at 36 years old.”
FH is a condition you’re born with. It causes high levels of LDL (“bad” cholesterol) that can build up in your arteries and lead to heart disease early in life.
But ordinary high cholesterol can also lead to serious problems for young people.
In the U.S., about 7% of kids and teens 6 to 19 years old have high total cholesterol. More than 12% of adults 20 and older also have it.
Your doctor combines your “bad” LDL (which moves cholesterol into your arteries) with your “good” HDL (which removes cholesterol from your arteries) to determine your total cholesterol number. In general, having a high HDL level is healthy because it lowers your odds of getting heart disease.
FH, or genetic high cholesterol marked by high LDL, is common. About 1 in 250 people worldwide have it. But most don’t know it.
You might think you can wait until you’re older to pay attention to your cholesterol numbers, but that’s a mistake.
“It’s a general misconception in younger people, primarily because you can have extremely high cholesterol and it presents with absolutely no symptoms,” says Peter Gaskin, MD, a pediatric cardiologist at the University of Maryland Children’s Hospital.
Things that could make you more likely to get high cholesterol are:
- Unhealthy eating habits
- Not getting regular exercise
- Smoking or inhaling secondhand smoke
- Being overweight or obese
If you’re a parent, help your child:
- Eat a balanced diet
- Get aerobic exercise
- Stay at a healthy weight
Also, get them checked for high cholesterol as often as their doctor recommends.
In general, children get their first screening between 9 and 11 years old, and every 5 years afterward. They may need to get their cholesterol checked when they’re as young as 2 if they have:
- A genetic history of high cholesterol
- Heart attacks
- Strokes
Healthy young adults should have screening tests about every 5 years once they turn 20. Once a woman turns 55 or a man 45, the screening tests should become more frequent.
Kids who get all their recommended cholesterol tests, practice heart-smart habits, and get treatment for high cholesterol if they need it will benefit later on, Gaskin says.
“It is exceedingly rare for a child to have a cardiovascular event. … This is all about trying to prevent things in early adulthood.”
Unlike ordinary high cholesterol, familial hypercholesterolemia happens because of a gene change that runs in your family. Most people with the FH inherit it from one parent. It’s rare, but some folks get an FH gene from both parents, which can lead to even higher levels of “bad” LDL cholesterol.
Also, lifestyle changes alone won’t help FH.
Wilson learned he had familial hypercholesterolemia when he was 8. The year before, his father passed away from congestive heart failure at 39. FH contributed to his death.
Once Wilson found out he had FH, his mother made sure he ate healthy foods that were low in saturated fat and cholesterol. He stayed active by playing T-ball, running around, and doing everything kids do. He embraced healthy habits and kept practicing them as he grew up.
When he began getting chest pain in his early 20s, his doctor put him on a cholesterol-lowering medication called a statin.
“‘Exercise. Don’t smoke. Eat right. And take this pill. Go to the emergency room for any issues,’” he says the doctor told him.
Wilson says he did everything “right” and still ended up in the ER with his first heart attack at 29. Looking back, he doesn’t think his doctors understood the differences between FH and ordinary high cholesterol. These days, he teams with a nonprofit organization called the FH Foundation to make those distinctions clearer for everyday people and primary care doctors alike.
“While diet and exercise are incredibly important in people with FH — and everybody — the important thing that people with familial hypercholesterolemia need to know is that diet and exercise will never do it all,” says Mary P. McGowan, MD, chief medical officer of the FH Foundation.
“They will require at least one medicine, sometimes many more.”
The good news is that several types of drugs and other therapies can help people with the condition get their cholesterol in check.
“We’re fortunate now that we have some of the treatments that we didn’t have back in the early ‘90s or late ‘80s that could’ve saved my father,” Wilson says.
The downside, McGowan says, is that too many people with FH still don’t realize they have it, and the consequences can be tragic.
“It’s estimated that there are about 17,000 deaths related to familial hypercholesterolemia per year, and those are largely preventable,” she says.
“We shouldn’t be losing people to FH because we have all the tools we need to treat it, and treat it well. We just need to get better at making the diagnosis early in life, in childhood.”
Talk to your doctor if you have a family history of early heart disease and your cholesterol is high. Those are both things that raise your odds.
To get the ball rolling, ask your family if any relatives had high cholesterol or heart disease. Then, take a close look at your own cholesterol numbers: LDL levels above 190 in adults and 160 in children are possible warning signs if you’re not taking any meds for high cholesterol.
If you think you might have FH and you want a second opinion after talking to your primary care doctor, ask for a referral to a cardiologist (a heart doctor) or a cholesterol expert called a lipid specialist.
“You really have to go to bat for yourself,” Wilson says. “Get second, third opinions, because it’s so under-diagnosed by everybody.”
To diagnose you, your doctor or specialist may look for hard-to-spot physical signs of FH in your eyes and on certain tendons and joints. This physical exam, along with your family history and your LDL levels, may be enough for them to go on. But they might also recommend a genetic test to confirm an FH diagnosis.
If you learn you have FH, your close family members each have a 50% chance of having it, too. Urge everyone to get tested, including your:
- Parents
- Siblings
- Children
- Aunts and uncles
- Cousins
The benefits of spotting FH early and getting it under control can be life-changing. Wilson, who’s raising five kids with his wife, knows this firsthand.
“We just did genetic testing for my three biological children, and we found out my daughter has it as well. She has the same gene that I have.” But, he says, “I know my daughter is going to be OK.”
As he recovers from his third heart attack, this 36-year-old savors each day with his family. And he keeps spreading the word about genetic high cholesterol.
“You’re not doomed because you get diagnosed with FH,” he says. “It’s not a death sentence by any means.”