A Daughter's Diagnosis, A Mother's Wake-up Call
Cat Davis Ahmed knew cholesterol was a family problem, but didn’t take it seriously until it affected her daughter.
Cat Davis Ahmed was in her early 40s, a mother of two daughters, when she first heard the term “familial hypercholesterolemia (FH).” But she had been aware of the condition practically all her life, because her father and his brothers all had abnormally high levels of cholesterol. Her youngest uncle had a bypass when he was only 28 years old. All four brothers had inherited high cholesterol from their mother.
“They understood it was genetic and had us kids tested when we were teenagers,” Cat said. FH is a dominant gene, so if a parent has it, there is a 50/50 chance each child will inherit the FH gene. “In my family, I inherited FH from my father, and so did my two sisters. We are three for three.”
Cat had her first cholesterol test at 16. “I know my numbers were really high in high school and college, but I don’t know exactly what they were,” she said. “The earliest lab result I can find shows a total cholesterol of 325 mg/dL when I was 23.”
Her uncles had multiple bypasses; one had a stent after a heart attack. Cat’s father had a heart attack while playing tennis. CPR revived him, and he then had bypass surgery. He was 57.
“The men in my family took each successive drug treatment available to lower cholesterol, tried every diet and took up all kinds of exercise,” she said. “Statin treatment did not come along until my father was 47; before that they used bile acid sequestrants and niacin. My father and his brothers are alive and well today, in their 60s and 70s, and probably the most fit and active men I know. This is, in part, because they had to take their health so seriously from an early age. But most importantly, it is thanks to the development of statins and effective surgical interventions, like stents and bypasses.”
Cat went on and off statins for about 10 years.
“People don’t like to think they need a pill, and I am no different. I thought I shouldn’t need medication if I could just get disciplined,” she said. “But each time I went off statins, my level was higher than ever.”
Knowing Cat’s family history with cholesterol, her daughters’ pediatrician ran a cholesterol check when she took blood for an unrelated test. Cat’s younger daughter, then age 7, had a level over 300 mg/dL. The pediatrician sent them to a specialist in New York City, where she first heard the words “familial hypercholesterolemia.”
“I took those words home and googled them,” she remembered. “At 3 a.m., I found the FH Foundation website, and I realized this is a ‘thing,’ — not just something that affects my family, but that affects many, many families.”
According to the FH Foundation, it affects approximately one in 250 people worldwide, and most of those people don’t know they have it.
“I saw that the Foundation was looking for volunteers and signed up right away and became an FH Advocate. I wanted to learn more for myself and my daughter, and I saw that there was a real opportunity to make a difference for families like mine.”
At the time of her daughter’s diagnosis, Cat was off her statins, and her LDL cholesterol level was above 300 mg/dL — over three times what it should be. “Finally, I got serious, and six weeks later I was on a statin and my LDL was below 100 mg/dL,” she said. “My daughter’s diagnosis was my wake-up call.”
Today Cat’s LDL cholesterol remains below 100 mg/dL with a combination of statins and a cholesterol absorption inhibitor. She feels lucky because people with FH often start with numbers that are two, three or four times higher than normal and need more than two types of intervention to get their cholesterol where they want it.
“Thankfully, there are other treatments available and more in development.”
Cat Davis Ahmed with her father, Tom
As a family, the Ahmeds follow a heart healthy diet. “I hope these lifestyle choices amplify the effect of medication,” Cat said. “But I know that diet and exercise are not enough for what my family has. Aggressive medical treatment is necessary.”
Despite having her cholesterol under control, Cat worries about all those years she put off treatment. “While I don’t have signs of heart disease now, I don’t know what damage all those years of untreated high LDL cholesterol have done to my arteries,” she said. “I wish I had started earlier. I hope I live a long, healthy life so I can be there for my grandchildren, like my father is there for my children. My hope is that my daughter never has to worry about that, because we are starting her treatment early.”
Today, Cat is a staff member at the FH Foundation, a patient-centered nonprofit organization dedicated to research, education and advocacy of all forms of FH, where she talks every day to people who are newly diagnosed. “I tell them to take FH seriously for yourself and your family,” she said. “Find a healthcare provider who understands FH and find a treatment plan to lower your LDL cholesterol that works for you. Make sure you get your family members screened for FH, including the children. And connect with others who have FH for support and inspiration.”
To learn more, see Cholesterol in the Family, Heart Insight Summer 2016.