World Heart Day 2015: FH Awareness and Personal Journey

I was diagnosed with familial hypercholesterolemia (FH) at 29. Like many FH patients, I had never heard of the disorder before my diagnosis. But as I learned more about FH, it was obvious that this disorder has been a part my family’s life for generations.

My dad had his first heart attack at age 36. His had his last heart attack at the age of 51. My family and I always assumed Dad was a victim of his lifestyle. He smoked. He ate things he shouldn’t have. And he didn’t go to the doctor’s office often. But now we know he was a victim of FH. As I traced the history of my family’s heart problems, I found that he wasn’t alone and that many of our relatives had heart attacks and other heart problems before the age of 50. And yet, none of them were ever formally diagnosed with FH.

This is a familiar tale for many of us with FH. Fortunately, like me, many of you reading this were diagnosed with FH and are managing your risk for a heart attack, stroke or other cardiac episode. It hasn’t always been easy, but we’re doing it. For me, it took a few tries to find the right statin, but, with the help of my lipidologist, I did. I am still working on getting my LDL where it needs to be; and, yes, I sometimes worry that the twinge in my chest is my heart attack. But I haven’t had one yet, and I am doing my best to be here for myself and my family.

I am an FH success story, and I want to help others become one as well. Unfortunately, 90 percent of people with FH do not know they have this disorder This means there are millions of people who do not know that they are 20 times more likely to have a heart attack than the average person.  That’s why I am working with the Family Heart Foundation as a FH Advocate and the National Forum for Heart Disease & Stroke Prevention, whose members include the Family Heart Foundation, the Centers for Disease Control and Prevention, and the American College of Cardiology, to raise awareness about cholesterol’s effect on the heart this World Heart Day. Help us get the word out and encourage your loved ones to speak with their health care providers about cholesterol before World Heart Day, September 29.

Nearly 1 in 250 Americans have FH. And, if you have FH, there is a 50 percent chance your children will inherit the disorder. But you and I know that FH is manageable, especially if it’s diagnosed early. I found out by chance at 29 during a life insurance exam. My doctors never talked to me about cholesterol because I was young and fit. This is a trend you know too well.  That’s why we need to be advocates for ourselves and for our family and friends.

We deserve a heart healthy future and so do our loved ones. Getting a cholesterol check is a simple way to ensure that you family and your friends live the life they deserve. Join us as we raise our voices to lower cholesterol in the U.S. It could save a life.

To learn more about World Heart Day, visit https://www.nationalforum.org/2015-world-heart-health-day-resources.  To learn more about Rhiannon, visit: https://familyheart.org/fh-advocate-for-awareness-shares-her-story-at-the-aspc/