Fern’s Story

Fern’s family tree looks like most of ours – full of grandparents, aunts, uncles, and cousins. But her tree is also full of extremely early heart disease.

Like many people with familial hypercholesterolemia (FH) and high lipoprotein(a), or Lp(a), Fern’s no stranger to the sadness and loss that these genetic disorders can bring to a family.

“My mother had her first heart attack when she was 41,” says Fern, “I was only seven.” In the early 1960s, her mom was facing a world that assumed heart disease was only a man’s disease. Fern remembers her mother’s total cholesterol numbers being around 600.

Before her mother’s heart attack in the ‘60s, Fern’s uncle died from complications of heart surgery. “So my mother was afraid to have risky heart surgery,” explains Fern, “She was a single parent to me and my brother, and she was afraid of leaving us.” Fern’s mom chose not to have surgery.

Eventually, she had a second heart attack and then developed congestive heart failure. “It was awful for me to watch,” describes Fern, “We’d go to New York City and my mother would have to sit down on the curb to rest. She couldn’t walk at a normal pace or distance. I was devastated.”

Her mom passed away when Fern was just 21. Before she died, she prepared her daughter with important life lessons. She taught her how to balance a checkbook, how to pay the rent, and gave her career advice. “She also told me to go to the doctor and dentist twice a year and the eye doctor once a year. But one important thing she told me was not to worry that the same thing would happen to me. She said scientists and doctors would figure this thing out.”

But Fern was still worried. She had seen what untreated heart disease could do, having ridden in the ambulance with her mother many times.

Her mom passed away when Fern was just 21. Before she died, she prepared her daughter with important life lessons. She taught her how to balance a checkbook, how to pay the rent, and gave her career advice. “She also told me to go to the doctor and dentist twice a year and the eye doctor once a year. But one important thing she told me was not to worry that the same thing would happen to me. She said scientists and doctors would figure this thing out.”

But Fern was still worried. She had seen what untreated heart disease could do, having ridden in the ambulance with her mother many times.

Fern took that fear and used it to advocate for her health. She’s been the first in line for every new treatment.

In the beginning, Fern was on bile acid sequestrants. After having her two children, she replaced those with a statin. Then, ezetimibe was added. Finally, she added a PCSK9 inhibitor.

“I listened to my mother,” she says, “I started taking my medicine at 35 and have never missed a day.”

Today, Fern is 65 years old, and her LDL has reached the medically recommended range for someone like her – 70 mg/dL. She’s passed her mother’s lessons on to her children. Her oldest son is 35 years old, and he’s taken his medicine every day since he was 12 – even through his college years!

To ease her anxiety, Fern decided to ask for a coronary artery calcium (CAC) score and other tests to measure the amount of calcified plaque in her arteries.

Her carotid artery ultrasound showed zero blockages.

Her CT angiogram showed zero blockages.

Her CAC score was 0.

“So I don’t think that’s just luck,” Fern says. “My results are more than good, they’re excellent! And knowing that has truly eliminated my anxiety.”

When Fern looks over her family tree, she is sad for those who didn’t have those treatments, like her mother. She is also frustrated by those who choose not to take medication. “They are adults,” she says, “It is their choice, but I’m afraid for them.”

Fern says she has just a few wishes – one of them being that everyone receives the gift of early diagnosis and treatment of FH. “It’s a gift and it’s a right,” she explains, “Everyone should know they have it.”

And she’s not giving up. She continues to share her story as a Family Heart Foundation Advocate. She is living proof that early and consistent treatment is key. “I’d love to be speaking about this in another 20 years!”

Fern T. is a Family Heart Foundation Advocate for Awareness. If you’re interested in joining the Family Heart Foundation as an Advocate click here to learn more.