Social Media Heart Science

Tuesday, February 28, 2012 - 3:20pm

Women suffering from rare heart condition convince Mayo Clinic to use online conversations in their research.

Imagine feeling like you're suffering a heart attack, only to learn you have a rare heart condition that no one really knows about.

You're told you're lucky to be alive, but doctors don't know why it happened or if it will happen again.

That's exactly what happened to more than 200 people around the world who used an online chat room to find each other and swap survivor stories.

It's through that chat room they got the Mayo Clinic to take a closer look at their disease.

The disease is called "SCAD" in which the inner layer of the heart artery tears away from the outer wall.

Most cases are fatal.

"I just remember lying on the cath table and the cardiologist looked like he was about to die," says SCAD survivor Katherine Leon.

"They said it's very rare, you're lucky to have survived, you're very brave, and they didn't really have any other information to give me on it," adds fellow SCAD survivor Laura Haywood-Cory.

Laura and Katherine turned to the internet.

The only resource available was an online chat group.

After a few years that chat room turned into the largest group of SCAD survivors ever identified.

Laura and Katherine decided to bring the survivor stories to the attention of Dr. Sharonne Hayes at the Mayo Clinc and push for more research.

"I had this patient coming and challenging and laying down the gauntlet, and basically I felt like I had to say I'm going to do something about it," Hayes says.

The Mayo Clinic designed a study, and Katherine and Laura led the recruiting process online.

"This was patient-initiated research, where they came forward and got this research off the ground," Dr. Hayes says.

"I just felt like this was my job -- to get the research going and see it through," says Katherine.

There's no shortage of participants.

"we are finding more women joining our group of scad survivors every day -- we just keep pointing them to the studies that are ongoing right now, encouraging them to participate," says Laura.

The research has started to provide some answers.

Doctors now know 70 percent of scad cases are in women and a third seem to be pregnancy related.

More studies are planned to figure out if genetics play a role, and to determine the best treatment.

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