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Sandra Revill Tremulis: High Lipoprotein(a)

At 39, Sandra was on the brink of a fatal heart attack because of elevated lipoprotein(a), a strong risk factor she inherited from her parents.

My risk was hidden, and not included in the standard lipid (cholesterol) test. ... I had inherited [it] from my parents.

Sandra Revill Tremulis: Lipoprotein(a)

I was 22 years old when my father died of a massive heart attack. It was the biggest tragedy of my life. He had his first heart event at age 30, bypass surgery at 40 and a fatal heart attack at 50. “This is never going to happen to me,” I said to myself. From then on, I was determined to do everything right. I had a family history of heart disease—I knew it—and I took action. This included regular workouts, a healthy diet and an annual physical. But, as I would soon find out, heart disease is a sneaky opponent that can lurk just beneath the surface waiting to strike.

In 2003, I was 39 years old and in great shape. I ran 30-plus miles every week and had completed my first marathon the previous year. One day, I was just getting started with my regular five-mile run when I experienced a feeling of extreme fatigue and a mild tingling in my chest. I slowed down, and the feeling went away. I figured that maybe I had the flu, early menopause or some kind of thyroid issue. However, I still felt like something just wasn’t right, so I went to see my family doctor. My doctor, who knew about my family history of heart disease, ordered a standard stress test, routine cholesterol test and checked my blood pressure. Everything was fine, or so we both thought, and I was given a clean bill of health.

Shortly thereafter, I went on a business trip and again experienced fatigue along with swollen feet. I thought it was just due to business travel, and I started taking a daily aspirin to help reduce the swelling in my feet. Still, just to make sure, I sought out a cardiologist to get things thoroughly checked out. The thallium stress test ordered by the cardiologist found major warning signs of a deadly blockage. I was immediately hospitalized and underwent a heart catheterization procedure the next morning. During the procedure, the cardiologist looked at the images, tapped me on the shoulder and said, “I’m not sure how you’re still here, your father must be sitting on your shoulder guiding your care.”

Test results showed I was on the brink of a fatal heart attack with a 95 percent blockage of the proximal left anterior descending (LAD) coronary artery, nicknamed “the widow maker.” The aspirin I started taking for my business travel may have saved my life. “How could this happen to me?” I asked. I did everything right. I was aware of my family history; ate a healthy diet; maintained a healthy weight; exercised regularly; never smoked; and I had “normal” cholesterol. Yet, at age 39, I nearly died of a massive heart attack, just like my father before me. I asked my doctor how this could be, and he ran a more detailed, advanced cholesterol (lipid) test to see what was behind my supposedly “normal” cholesterol numbers.

But just what is “normal” cholesterol? Most of us are familiar with HDL cholesterol, LDL cholesterol, total cholesterol and triglycerides. But my risk was hidden, and not included in the standard lipid (cholesterol) test. My risk was from a very bad lipoprotein, a form called lipoprotein(a)—also known as Lp(a) or “Lp little a”—that I had inherited from my parents. I had levels of Lp(a) above the "normal" range. This motivated me to find out more about this mysterious and dangerous condition that affects millions of Americans. I discovered that Lp(a) has been identified as the strongest genetic risk factor for coronary artery disease, affecting about 1 in 5 Americans. Furthermore, each child born to a parent with elevated Lp(a) has a high risk of inheriting it, as I did. I also discovered a widespread lack of awareness of this condition, which led me to found the Lipoprotein(a) Foundation in 2013.

The Lipoprotein(a) Foundation is now a recognized 501c(3) non-profit organization, and our mission is to empower patients and prevent cardiovascular events due to high lipoprotein(a) through proper testing and diagnosis. Our goal is to save lives by increasing awareness, advocating for routine testing, and supporting research that will lead to a specific treatment for elevated lipoprotein(a). I am so fortunate to have beaten the odds, and I am now devoting my life to warning others about this hidden and deadly condition. There is currently no specific treatment for high Lp(a). However, awareness is critical, and in people with high Lp(a), other risk factors that are treatable can be aggressively managed.

In the meantime, we can save lives by increasing awareness and advocating for routine testing and development of a specific treatment for high Lp(a). The foundation is also actively supporting research into several very promising treatments for Lp(a). Through this new foundation, we can turn awareness into action and build a community of Americans committed to becoming educated about Lp(a) and being empowered to advocate for their own health and that of their families. My vision is to live in a world where elevated Lp(a) is routinely diagnosed and treated, and the entire family is screened. I’ve been given a second chance and a tremendous opportunity to help get testing and treatment programs in place to help my daughter and all those who have a high risk of inheriting elevated Lp(a) from their parents.

For more information, please visit lipoproteinafoundation.org.

Sandra Revill Tremulis, right, with Sheri Rous, a fellow Lp(a) advocate.

 

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