Stacey’s Story: The First in Line for Every Cholesterol-Lowering Treatment

Stacey has known she had familial hypercholesterolemia (FH) since she was a child. “My dad had his first heart attack when he was 36,” she says. “And at that time, his cholesterol was so high the doctors couldn’t measure it.”

They sent her father home, and a few years later he died of a massive heart attack. Stacey was 6 and her younger brother was just 3 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. This is something Stacey has always appreciated. “Often luck plays a big role in life,” she explains. “I happened to have a really smart pediatrician who didn’t like the patterns she saw in my family.” Stacey’s pediatrician noted her father’s early heart attack, her grandmother’s fatal heart attack, and her aunt’s premature chest pains and insisted the kids have their cholesterol tested.

“People thought she was nuts.” But she wasn’t. Stacey’s cholesterol came back in the 400’s.

“We tried every drug over the next 15 to 20 years.”

Luck came into play again since Stacey happened to grow up down the street from Rockefeller University, a research hospital in New York City. “My brother and I were enrolled in any observational study available,” Stacey explains. “Ultimately we tried every drug over the next 15 to 20 years.” It started with bile acid sequestrants, Niacin, and other therapies – all of which were only moderately effective. Nothing helped her achieve safe LDL ranges.

Despite her determination to treat her cholesterol, in her early 20s Stacey looked in the mirror and saw the beginning of a corneal arcus. “I remember little about my dad,” she says, “but I do remember that he had these big blue eyes, and everyone said he had a big white ring around the color part of his eye. At that point I knew I was going to have a heart attack if I didn’t do something about it.”

“There was nothing we could do for your dad. There is an enormous amount we can do for you.”

Over the next 35 years, every time a new cholesterol-lowering medicine became available Stacey’s doctor called her. “Actually, my brother was the first call. I was the second,” says Stacey. She started statins in her 30s and was first in line for a PCSK9 inhibitor. Her LDL is now around 45 mg/dL.

While Stacey’s LDL is adequately under control, she recently discovered she also has high lipoprotein(a), also known as Lp(a). “Just like I anxiously awaited the development and approval of statins, and just as I anxiously awaited the development and approval of PCSK9 inhibitors, I now anxiously await the development and approval of the class of medications that will lower Lp(a).”

“They’re going to be fine as long as they take their medicine.”

Because of all of these efforts, Stacey and her brother are in their 60’s and neither have had any cardiac events.

Two of Stacey’s three children inherited FH, and she has two young grandchildren who will be screened and treated, if necessary.

“My song and dance with my kids was that they were going to be just fine as long as they took their medicine,” Stacey explains. And getting that medicine for her children was a journey full of roadblocks. “No one would put my kids on a statin. I searched and searched until I found a pediatrician that would.”

“I’ve been fortunate, but almost everyone else with FH hasn’t been. I would like to change that.”

Stacey had access to the early and aggressive treatment. That’s why she supports the efforts of the Family Heart Foundation in finding all the other families suffering the effects of FH and high Lp(a). “I’ve been fortunate, but almost everyone else with FH hasn’t been. I would like to change that,” says Stacey.

As a long time Board Member and benefactor of the Family Heart Foundation, Stacey sees the incredible role it has played in helping people make their own luck. From the specialist map to the Care Navigation Center, the resources the Family Heart Foundation provides are instrumental in making sure everyone can find the right doctor and the right care. Stacey knows this initiative means hard work and support in every way. “We have to support the discoveries that will translate into the care that will save people’s lives,” she says.

The work of the Family Heart Foundation does, indeed, save lives.