I Never Had a Clue

Monday, May 1, 2017

Familial Hypercholesterolemia Foundation, by staff

I had no idea I carried a potentially fatal genetic mutation, because we never talked about our family history. 

My mother was a foster child from a young age. She never spoke about her parents, probably because she didn’t know much about them. My mother was married young. My older half brother and sister were much older and I had little contact with them. It was a surprise to me to learn that my half brother had had 7 heart attacks, 2 stents, and a double bypass surgery. I found out when I was 34 that I had extremely high cholesterol. I was looking for answers after I was diagnosed. I knew at 14 that I had high cholesterol but I had no idea where it came from or what it meant for me. I had no idea it was genetic. After a few years had passed, trying different treatments, I still had no control over my very high cholesterol. I started to want answers to my questions – Where did this come from? What exactly is this? Why aren’t the statin, the ezetimibe, and the bile acid sequestrant working on my numbers? I felt more urgency when, at age 37, I was diagnosed with Homozygous FH, the rare form of genetic high cholesterol. I was losing hope. Read more.