Stacey has known she had familial hypercholesterolemia (FH) almost her whole life. Her father had his first heart attack when he was 36 and sadly, he died of a heart attack when Stacey was just 6 years old.

Stacey’s family understood that she and her brother had inherited high cholesterol from their father, putting them at high risk for early heart disease. The family took action to manage that risk and found the right doctors to help them along the way.

At first, that meant following a healthy diet and later, taking bile acid sequestrants, Niacin and other therapies, all of which were only moderately effective. Despite those interventions, Stacey started developing signs of early plaque build up, such as xanthomas and ankle pain. But, no matter how challenging the treatment, Stacey stuck with it. When asked how she stayed so vigilant over the years, Stacey replied: “I was just brought up this way.”

It wasn’t until statins came on the market when Stacey was in her 30s, that her cholesterol levels became adequately controlled. This effective combination of therapies have caused her Achilles xanthomas and other symptoms to recede, although the corneal arcus she developed before her cholesterol was managed remains a daily reminder of FH.

Two of Stacey’s three children have also inherited FH. Which puts her children in the High Risk category when it comes to heart disease. Thus, Stacey taught her kids the importance of sticking to their own treatment plans. But, she admits, it can be hard to explain FH to kids, especially because it’s a silent disorder that may be asymptomatic. She has tried to emphasize how serious FH is without scaring her children. If it’s left untreated, cholesterol can build up over a lifetime and result in early heart disease, like it did for her father.

Today, Stacey and her brother are in their 50s and happy to report that neither has ever had a cardiac event. She attributes their positive outcomes, so far, to early and aggressive treatment.

Stacey Lane has been an active FH Foundation Patient Advocate and we are very proud to announce that she is the newest member on our Board of Directors.

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