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When you think of a person with high cholesterol, who do you picture?
Maybe an overweight man in his 50s who loves burgers and good old-fashioned Wisconsin cheese? Maybe a woman in her 60s who smokes and doesn't like to exercise?
How about an athletic 9-year-old who plays three different sports and prefers fruit to fast food?
Sometimes, our preconceived notions about high cholesterol don't match reality — particularly when it comes to kids who inherit high cholesterol from their family. Did you know it was even possible for seemingly healthy children to have cholesterol so high that they're actually up to 100 times more likely to have a heart attack or a stroke at a young age? And these conditions are more common than people realize.
When High Cholesterol in Kids is Genetic
That's why it's so important for parents to know about a genetic disorder called familial hypercholesterolemia (or "F" for short) — a condition that results in severe high levels of blood cholesterol in children. FH is caused by changes in a gene that lowers the body's ability to remove the "bad" type of cholesterol from the blood - low-density lipoprotein, or LDL.
When you have too much "bad" cholesterol, your arteries can clog or harden from a process called atherosclerosis. Atherosclerosis happens when fat, cholesterol and other substances build up in the walls of arteries and form hard structures called plaques. Over time, these plaques can block the arteries and cause early heart disease, heart attacks or strokes.
So when a child has inherited high cholesterol, or FH, plaque can build up and narrow the arteries, making them stiffer. These changes make it harder for blood to flow through them.
If FH is left untreated, about 50% of males and 25% of females will go on to have an early heart attack or stroke, before age 50. But without early blood cholesterol testing, the vast majority of those who have FH will grow up having no idea they have it.
"You will have absolutely no symptoms until you have a heart attack or stroke," says Dr. Amy Peterson, a pediatric preventive cardiologist at American Family Children's Hospital. In Dr. Peterson's Pediatric Preventive Cardiology Clinic, her team specializes in FH, abnormal cholesterol and other conditions that put kids at risk for early heart disease.
Peterson refers to familial hypercholesterolemia as "the poster child for early intervention," because once the high cholesterol levels are lowered into the normal range, the risk for early heart attack or stroke starts to go down.
The Guidelines: Get your child's first cholesterol check at ages 9-11
That's why it's so important to have your child's cholesterol tested at the recommended age range of 9-11, and again at age 17-21, per the National Heart, Lung and Blood Institute guidelines, which are also endorsed by the American Academy of Pediatrics.
"By checking kids when they're younger, it's so much easier to sort out the kids who have high cholesterol because of genetics vs. lifestyle," Peterson explains. "And because it's a potentially fatal problem, we can really help families with the early testing."
Often, when a child with abnormally high cholesterol is diagnosed with FH, parents also get tested and learn they have the same condition, Peterson says.
"The remarkable thing is, when we find it in kids, those kids are of course part of a family — so it's not just your child that can benefit from this testing," Peterson adds. "It can shine a light on what may be a silent health problem for the whole family."
And this particular health problem is actually more common than one might think.
"FH affects about 1 in 250 people, which makes it really common for a genetic disease," Peterson says. "And in fact, it's actually the most common genetic disease that can kill people. That's why the early testing is so powerful."
How is FH Treated in Children?
Eating a healthy diet low in saturated fat and cholesterol can lower problematic LDL cholesterol. But for children with FH, this often isn't enough. Most children with FH will need to take medicine to lower their cholesterol, such as statins or other types of medication.
"Diagnosing FH at a young age is important because the treatment works best when started early — before too much extra cholesterol in the blood vessel walls builds up," Peterson explains.
Many healthcare providers follow the American Academy of Pediatrics-endorsed guidelines for cholesterol testing between ages 9-11, but Peterson advises asking your child's primary provider about it if your child is in this age range but hasn't been tested. Learn more about familial hypercholesterolemia: