Blindsided by SCAD: Spontaneous Coronary Artery Dissection.

(Reprinted from the Uplifting Athletes blog)

Uplifting Athletes supports the larger rare disease community in addition to the rare diseases our 25 student-athletes led chapters champion. We welcome any rare disease organization to share their story with our audience. Spontaneous Coronary Artery Dissection (SCAD) is a rare, sometimes fatal traumatic condition that causes heart attack. The coronary artery develops a tear causing blood to flow between the layers, which forces them apart. Nearly 80 percent of SCAD cases affect women. The SCAD Alliance raises awareness and focuses on collaboration in the quest to empower survivors and health partners in the fight against this rare disease.

By Katherine Leon

It’s rare. You either die, need a heart transplant or get lucky … like you.

These words, spoken by my well-meaning cardiologist, still ring in my ears 11 years later. I say well-meaning because his intent was a bit of tough love to jolt me back to the business of caring for my newborn and 20-month-old sons.

But he wasn’t the one who’d had what is referred to as a “widow maker heart attack” out of the blue caused by a torn artery.

He wasn’t the one who was 38, never smoked, had pristine arteries, and lifelong blood pressure of 94 over 60.

He wasn’t the one who was struggling to recover from emergency double bypass surgery and a detached rib – collateral damage of the surgery.

And he didn’t have to worry if his kids would someday have a heart attack from a rare event that is now called spontaneous coronary artery dissection (SCAD).

My doctor had no pamphlet for me because he said the cause of my heart attack had never been researched. It was too rare to research.

In fact, he said I’d never meet another person who’d had SCAD.

It was really hard to understand that in 2003, a heart attack killing someone at such a young age had never been researched.

That day I made up my mind. Before I checked out of this world, I would get research started and make sure that anyone else diagnosed with SCAD would know exactly what happened, why, what to do about it, and – hopefully – how to prevent it from happening at all.

I would find the patients and bring them to the researchers. It seemed logical. If the reason SCAD hadn’t been researched before was access to survivors, how could researchers say no if the patients came to them?

My good fortune was to be alive in the age of the internet and searching online became my obsession.

When the boys were asleep at night, I would search for any and all terms related to heart attack, torn artery, dissection … whatever I could think of to find fellow SCAD survivors.

It took several years to find the first few people, but once our conversations became searchable in Google, the numbers began to grow. By 2009, I had a document that summarized the experience of more than 70 SCAD survivors worldwide and several family members of those who had died.

With data and a research agenda, I pursued an opportunity to meet a researcher.

While attending a heart disease symposium at Mayo Clinic, I got up my nerve to ask a cardiologist to be the first to research SCAD. From her background and role at Mayo, she seemed like the one person in the world who might just hear me out. And she did. It didn’t bother her that my fellow patients were people I’d never met in person.

She threw herself into the task of researching SCAD using participants I’d recruited on social media. After an intensive Institutional Review Board process, Mayo approved first a pilot study. And in September of 2011, a global registry of SCAD patients and a DNA biobank was launched.

The registry has grown to include nearly 400 participants. The DNA biobank holds several hundred samples.

Other institutions worldwide, including the University of British Columbia, University of Leicester in the United Kingdom, and Massachusetts General in Boston, have now launched clinical studies of SCAD as well. But there is a problem.

As encouraging as this progress sounds, every day patients go undiagnosed as we wait for the research to find answers. It is still common for patients to be told the heart isn’t the problem.

We’re young. We’re athletes. We don’t have traditional risk factors for heart disease. Doctors and emergency departments must be on the watch for SCAD.

Our average is 42 but we know men and women as young as 20 who are struggling with the aftermath of SCAD, which includes everything from depression to even heart transplant in some cases.

We must educate doctors while the science develops. The more we educate the more lives we save by preventing heart attack and sudden cardiac arrest from SCAD. That’s the mission of SCAD Alliance. Help us stop the blindside.