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Cholesterol Disorder May Affect Millions of Unsuspecting Children and Adults

A Denton County woman is shining the spotlight on a cholesterol disorder that affects millions of Americans.

Familial hypercholesterolemia is a genetic disorder that causes cholesterol to skyrocket to levels not even common medications can handle.

Wenter Blair Anderson, of Ponder, and her son, Christian, stay active and eat healthy, but no lifestyle change can bring down their high cholesterol levels because each has FH.

At only 49 years old, Blair Anderson has already had three attacks.

"I started to sweat profusely from every pore, like someone had a water bottle on me, and my stomach was a little upset, and I thought, 'My God, these hot flashes,'" she said.

The next morning, at the advice of her obstetrician, she had an EKG, which revealed she had a heart attack.

She was 41 years old.

"I'm like, 'Excuse me? I ran a 10K a week ago!'" Blair Anderson said.

Four of her arteries were blocked at 90 percent, and doctors told her she was a week away from death.

Yet, the only red flag something might have been wrong was a history of high cholesterol.

"My doctors would say, 'Oh, gosh, you have high cholesterol, you may want to eat some more fish and walk a little further,'" she said.

Diet and exercise would have never prevented her heart disease, says Baylor cardiologist Dr. Cara East, who researched the disorder.

"The high cholesterol levels are entirely due to the gene. They are not related to diet or lifestyle changes, so unfortunately they can't really change their lifestyle to treat it," East said.

The FH Foundation estimates about one in 250 people worldwide has FH. In the United States alone, an estimated 1.3 million people live with FH, yet only 10 percent of them are diagnosed.

For many of them, cholesterol lowering medications like statins may not be enough.

East enrolled Blair Anderson into a clinical trial for a new drug that when used with a statin can drastically lower a patient's cholesterol.

"With the combination of the PCSK9 inhibitor and the statin, we can get patients' cholesterols levels close to normal, but sometimes never completely normal," East said.

The drug, she says, is saving Blair Anderson's life.

"When we got below 200, I was like, break out the champagne!" Blair Anderson said.

She enrolled in the trial, not just for her life, but for her son's as well.

Christian was diagnosed with familial hypercholesterolemia at age 11 and has been taking statins since.

"I've seen her take it for years, and so it's not an uncommon new thing for me, but it's definitely saving my life, so it's a big deal for me," he said.

Blair Anderson's current mission is to spread awareness.

She is a founding board member for the the FH Foundation, a patient-centered nonprofit dedicated to research, advocacy and education of familial hypercholesterolemia.

She also serves as a board member for the Foundation of the National Lipid Association, a foundation that supports patient and clinician educational, research and community outreach activities that enhance and support the initiatives of the National Lipid Association in its efforts to reduce cardiovascular events and deaths related to abnormalities of cholesterol metabolism.

"There are almost 16,000 children with FH in Texas that are undiagnosed. That means there are 16,000 parents that are undiagnosed. That's literally a shotgun in your face that you haven't seen yet. My objective is to disarm that shotgun and get it out of the story altogether," Blair Anderson said.

Many individuals with FH look healthy, according to the FH Foundation, yet their arteries may be significantly diseased.

If you have a family history of early heart disease or death from cardiac events, as well as an LDL-cholesterol level over 190 mg/dL, then you need to work with your clinician to rule out FH as the cause.

FH is suspected when LDL-cholesterol is above 190 mg/dL in adults and above 160 mg/dL in children without cholesterol-lowering treatment.

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