WebMD My Story: Living With High Cholesterol

A reader sheds light on a genetic condition that affects her and her family.

From the WebMD Archives

In October 2009, no one would have thought I had heart disease. Then, as now, I was 5 feet 4 inches, 120 pounds, and eating really well. I was only 40 years old. I was at a restaurant and had the worst hot flash ever, plus terrible chest pressure. My doctor insisted I come in. After taking an EKG, she said, "You just had a heart attack." I was shocked and panicked. I didn't want to leave my two children without a mother.

Even then, my doctors couldn't believe I had heart disease. But a heart catheterization, a kind of imaging procedure, revealed that four of my arteries were 90% blocked. Over the next 2 weeks I had five stents (or tubes) put in my arteries.

As it turns out, I have familial hypercholesterolemia (FH), a genetic disorder that results in a dangerous buildup of LDL, the so-called "bad" cholesterol. The disorder often isn't diagnosed until a person has an early heart attack or stroke. I learned that my son Christian, now 14 and a super-fit kid, also has FH and could have a stroke or heart attack as early as his late teens.

Fortunately, he takes a low-dose statin, which lowers cholesterol levels and helps protect against heart disease. My body reacts badly to statins, so I am enrolled in a clinical trial of a drug that helps the body remove LDL cholesterol from the bloodstream.

Today I am convinced I was allowed to live because I may be a little person, but I have a great big voice. I write and do public speaking about FH all over the country. I use FH to be bigger and happier, so my children see and hear the joy that comes with giving.

Tips on Children's Cholesterol

Ask for a cholesterol test for your child. The American Pediatric Association recommends testing all children between the ages of 9 and 11. A baby is born with FH every 5 minutes.

Ask for a genetic test or a cholesterol test for yourself if members of your family have had heart attacks when they seemed healthy. A very high LDL level, plus a family history of early heart disease, means you may have FH.

Live a heart-healthy life. Diet and exercise aren't enough to lower cholesterol if you have FH. But eating healthy foods and exercising have other heart-health benefits, help control weight, build strength and endurance, and prevent other diseases.

Cholesterol Questions for Your Doctor

1. What cholesterol tests should I have?

2. How often should I have them?

3. How can diet and exercise help my cholesterol levels?

4. What is my risk for heart disease?

5. What symptoms should I watch for?

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