FH Family Story – Jane S.
New treatments available today for Familial Hypercholesterolemia (FH) can help save lives. If these types of treatments were available before my father died at 57, he may have walked me down the aisle. My daughter and niece could have known their grand-daddy. I may have had the chance to know my own grandfather, who died at 40. Today, because of the treatments available, if I am lucky I will live to be a grandmother.
In 1980, when my father had his first heart attack in his early 40s, and had a quadruple bypass and an aneurism, I was 15 and my brother was 19. His surgeon told us to get our cholesterol tested because one of most likely got the gene. He was right. I’ve known since I was 16 that I got the short straw and I never expected to see 50. His surgeon also said that he didn’t think we would have to go through what our father did. It was horrific! He thought science would advance before it affected either of us. Well, there has been progress since then but we still have a way to go.
I had side effects from statins – I could barely walk. I remember when I took them telling my doctor that, when they came up with something to fix the gene to call me. I am hoping that the new PCSK9 inhibitors now in clinical trials are part of the answer for me.
Today, I do LDL apheresis every other week to manage my FH and it’s working for me. I travel 350 miles each way to the apheresis clinic, but I am still alive at 51 and have had no events. I am very thankful for this.
My message is, God Bless and get your family tested. Knowing your numbers is very important. If you are the 1 in 200 who have inherited this gene for high cholesterol, you better pay attention and treat it!!
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