A Centerliner Goes to Washington
Jun 15, 2016
Every morning, my fellow Centerliners walk through the kitchen as I prepare my breakfast and take a handful of pills. Some of them ask what they are, and some of them don’t. The truth is all of those pills – and the morning ones are only a fraction of my daily regimen – are for my genetic cholesterol disorder, familial hypercholesterolemia.
Try saying that out loud once, let alone five times fast. That’s why we simply call it FH.
Growing up, I always knew high cholesterol ran in the family. In 1966, my then 30-year-old grandfather died of a heart attack while dancing with my grandmother. His brothers also succumbed to heart attacks and failures at the ages of 11, 12, 32, 33, 62 and 67.
FH wiped out an entire generation of my family, but still we had no idea what it was – the doctors just blamed “bad genes.”
My mother’s generation has progressed slightly – less heart attacks, but plenty of procedures. At the age of 42, my mother went in for a quadruple bypass, and since then she has continued to have heart problems, including several stent procedures.
Then there’s me. When I was a spry nine years old, my mother insisted that the doctor check my cholesterol. The results weren’t ideal – with a total cholesterol level of over 400, I had obviously inherited the “bad genes.” The images of a grandfather and uncles gone too soon, as well as my mother’s surgeries, loomed over me through my entire childhood. When would it be my turn?
Then, everything changed during a simple check up.
This doctor – a new doctor – saved my family and changed my life when she looked up at me from my chart and said, “Well, you have what’s called familial hypercholesterolemia.”
It had a name. It had a name, and we never knew it.
Obviously, this name went straight into my Google search bar, and up popped The FH Foundation – a nonprofit patient advocacy and research organization. I dove into all their resources, and combed through stories of others who had this disease. I wasn’t alone.
It wasn’t long before I joined them as a patient advocate.
The mission of The FH Foundation is simple – we strive to raise awareness and save lives. The biggest misconception about FH is that it’s rare. In fact, research suggests it may be as common as 1 in every 250 people, but 90% of those affected go undiagnosed.
If we can spread the word that this disorder is very real and very common, we can save approximately 1.3 million people in the US alone because – wait for it – FH is treatable, hence all my morning pills.
Once diagnosed, there are a number of treatments available to FH patients. This isn’t your grandfather’s cholesterol. This isn’t the “cut back on starches” cholesterol. This is genetically inherited high cholesterol that begins accumulating at birth. Diet and lifestyle are important, but they’re important for everyone. FH patients need more specialized and aggressive care to avoid cardiovascular disease in their 30s or earlier.
Through the Centerline100 program, Centerliners are given eight hours of paid time off to volunteer at the organization of their choice, and this year, I spent my time working with some people that could truly make a difference for our organization.
Patient advocates, physicians, Foundation members and I spent Monday on Capitol Hill, telling our stories to Senators and Representatives in the hopes of raising awareness of a dangerous and costly disorder affecting many of their constituents.
It was such a unique and exciting learning experience, and I will forever be grateful for the opportunity granted to me by The FH Foundation and the Centerline100 program. As I walked the halls of our nation’s decision makers, I’ve never felt more certain that what I was doing was truly making a difference for the future.
For more information about familial hypercholesterolemia or The FH Foundation, visit www.thefhfoundation.org.