Social Media Used to Research Heart Attack in Young Women

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In May 2011, at age 40, I had a heart attack and cardiac arrest. I was fit, healthy (I thought) and too young for something like that to happen (I thought). As soon as I got home from the hospital, I started researching the “fluke,” as my cardiologist called it, that had led this to happen. I found very little information. Not only was Spontaneous Coronary Artery Dissection (SCAD) something I had never heard of bef­­­­­ore May 2011, it appeared that the medical community was almost as equally in the dark. The few scientific papers that I did find were outdated and offered grim statistics and ambiguous outcomes for SCAD patients. There weren’t any SCAD survivor support groups to join or active research studies I was aware of, and the months that followed were lonely and nerve-wracking. I was a young, physically fit, energetic mom who was now spending mornings in cardiac rehab with patients twice my age.

What was so hard to comprehend was that in a blink of an eye and without warning, healthy, young women could be stricken by SCAD and die, yet the medical community wasn’t actively researching the tragic phenomenon. Perhaps it was because it was considered so rare that support for such a study would be difficult to find, or that finding enough SCAD survivors would be even more problematic. However, on August 30, 2011, an article ran in the Wall Street Journal entitled, “When Patients Band Together Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On.” For me, this article changed the dark face of SCAD dramatically and I would find myself and many other young women just like me able to see day light again.

The article chronicled the creation and completion of a small pilot study of SCAD, led by Sharonne Hayes, MD, Professor of Medicine in Cardiovascular Diseases at Mayo Clinic in Rochester, Minnesota. I anxiously looked for more information on the upcoming larger, virtual study mentioned in the article, wondering if I could participate. If my experience could help save a life, I was eager to do so. When Mayo and Dr. Hayes launched Genetic Investigations in Spontaneous Coronary Artery Dissection (SCAD), I signed on immediately.

What is SCAD? Despite finding citations as long ago as 1931, the definition hasn’t changed. SCAD is a sudden tear in the coronary lumen (the central cavity of a tubular or other hollow structure) creating a “false” lumen where acute bleeding into the vessel wall of a coronary artery occurs. This accumulation of blood compresses the true lumen, restricting or preventing blood flow to the heart muscle. SCAD can cause a heart attack and sometimes, sudden cardiac arrest. It strikes without warning, and most of its victims are young and otherwise healthy women with no history of familial heart disease. Many of the women are either pregnant or in the post-partum period.

The Mayo study aims to look at whether mutations within certain genes cause susceptibility to spontaneous coronary artery dissection. The goals of the study are to create a genomic DNA and plasma biobank for individuals diagnosed with SCAD as well as identify inherited and new mutations that underlie SCAD. In the long term Mayo researchers hope to discover molecular and cellular mechanisms of SCAD and develop biomarkers to enable prediction and prevention. The purpose of the research is to identify mutations (defects in the genetic blueprint) that cause tears in blood vessels that supply the heart. Some mutations may be inherited (passed on) from a parent without an apparent blood vessel problem while others may develop for the first time in the affected person. The study includes individuals diagnosed with spontaneous coronary artery dissection and their biological parents. Enrollment in the study is ongoing and easy, just click here to obtain a Clinical Studies Request Form. The participation of as many SCAD survivors as possible is critical to the success of this potentially life saving study.

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