L40 — October 2011 — Spontaneous Coronary Artery Dissection (SCAD)

Intro: Don't worry — you're just tired and out of sorts after having your baby. But the chest pain experienced by the woman you're about to meet was much more than a difficult recovery. She had a heart attack when a rare and deadly condition stopped blood flow to her heart. The same thing happened to another woman. After sharing their stories on social networking sites, they found more women with the same problem. That's when they contacted Mayo Clinic to convince cardiologists to use the information they gathered on the Internet to research this condition.

It happened right after the birth of Katherine Leon's second child.

I had the classic heart attack symptoms. I had severe central chest pain, numbness up my arms.

Pain in the center of my chest that was radiating down my arm and up into my jaw.

Laura Haywood-Cory's heart attack happened at night. But both women, who were strangers to each other at the time, were fit, healthy and had no risk factors for heart disease.

I heard one of the doctors say he had never seen anything like this before.

Laura and Katherine had what's called a spontaneous coronary artery dissection, or SCAD. A tear develops in the inside of a coronary artery, allowing blood to create a split between two layers of the wall. This may result in a loose "flap" of tissue on the inside of the artery. This flap, or a blood clot that forms in the damaged artery, can block blood flow and potentially cause a heart attack.

Doctors in their home towns told both women SCAD was rare and there was really no information available about why it happens, who's at risk or the best ways to treat it.

I thought that's just ridiculous. That's what prompted me to start looking. Through this women's heart message board, I found people and collected their names for six years.

Women who had the same condition. Katherine thought maybe SCAD's not as rare as they think.

Boom, one day there was this awesome post started by Laura.

Who was blogging about SCAD.

We were really excited to meet each other in person.

Both were searching for answers and their quest didn't stop there.

Where's the research?

They went to Mayo Clinic, where at a conference, Katherine reached out to cardiologist Dr. Sharonne Hayes.

Katherine approached me and she said, "Nobody's studying this disease. What is Mayo Clinic doing?" And I had to answer her honestly, nothing at that time, but I would look into it.

Dr. Hayes saw the data Katherine had collected through social networking.

She shared with me not only the existence of this group, as well as a very sophisticated research agenda of questions that members of this group who had suffered SCAD had come up with.

This information prompted Dr. Hayes to put together a first-ever pilot study to learn about SCAD.

I was thrilled when she emailed me back and said, "Alright, let's do it."

We looked at this as an opportunity, not only to better understand SCAD and this disease, but to test a way using a social media group, essentially a medical Facebook group, to come together, self-identify, volunteer for the study and see if we could get enough information from that group to make conclusions.

And from those conclusions, the goal will be to eventually give doctors and women the information they need to prevent and treat this potentially deadly condition.

The unknown is just awful. If I can prevent someone from having that, it would be a life's goal accomplished.

All thanks to the initiative of two women and the willingness of a doctor to listen.

For Medical Edge, I'm Vivien Williams.

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SCAD affects many more women than men, and the average age of people who have it is 42. The pilot study is published in the September issue of the journal Mayo Clinic Proceedings.

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