When I was 38, I began to experience increasing chest pains with exercise. The pain became so severe I could not walk up an incline.  We lived in the Hollywood Hills.  In the evenings, my husband and I would walk our Bernese mountain dog.  When we circled back to the base of the hill we lived on, my husband would run up the steep hill to our house and drive the car back down to fetch me.

When my doctor finally ran a stress test, it showed I had dangerously high cholesterol. I needed emergency surgery and a stent or my clogged arteries could kill me. 

Even the fear of dying did not compare to the heartbreak of learning that my baby daughter, Ella, had inherited the genetic mutation that I carried. She, too, would face a life-long battle against heart disease. Ella and I share a genetic condition called familial hypercholesterolemia (FH). FH prevents the body from naturally cleansing cholesterol from blood. The shocking thing is that FH is quite common, affecting 1 in 500 people in the U.S. And about 80% of those with FH in the U.S. are not aware that they have this condition. If FH is not diagnosed and treated, carriers are at a high risk of premature heart disease. The stakes are high.

FH can even affect children and teenagers. This is why it so important for parents to get their children’s cholesterol levels tested, especially if there is a family history of high cholesterol. Now age 5, my daughter Ella still has high cholesterol, but because she was tested we were able to start treatment early to try to lower her cholesterol levels.

I had seen countless doctors over the years about my cholesterol, but FH was not mentioned until I met with a lipid specialist after my heart attack. I was only 38, but I already had severe blockage in my arteries and permanent damage to my heart tissue. As a slender nonsmoker who eats healthy foods, I do not look like a heart disease candidate. But I have 20 times greater risk of having a heart attack than someone else my age.

Once I discovered that at least 620,000 people like me are living with this “silent killer,” I knew I had to take action.  I became an advocate for people with FH. In 2011, I started the FH Foundation, the first patient organization for FH in the U.S. FH Foundation colleagues and I speak to doctors and patients around the world about the life-threatening nature of FH and how to get help. Our goal is to help prevent cardiovascular disease and early death due to FH.  The FH Foundation also provides patients and their families support and information about the latest FH treatments, news, research and more. We especially want to empower parents to understand FH and to recognize whether their children might be at risk. You can learn more about us at: http://www.thefhfoundation.com.

Katherine Wilemon is president of the FH Foundation, and lives in Southern California with her husband and daughter.