L41 — October 2011 — SCAD 2 Social Media as a Lifesaving Link
Intro: The wealth of medical info on the Internet has become something of a double-edged scalpel. While hypochondriacs can quickly get in over their heads, a quick computer search brings millions the basics on almost any condition. And when that fails, Mayo researchers learned, social networking sites may be the place to begin unraveling medical mysteries. Here's Dennis Douda for Medical Edge.
Everybody said, "Nope. You have two kids under 2. You're fine, just keep plugging along." But on April 30th, I had the classic heart attack symptoms.
Katherine Leon of Alexandria, Va., knew something was wrong. But even with crushing back and chest pain, shortness of breath, and numbness in her arms, doctors at the hospital emergency room sent her home. No one thought a healthy 38-year-old woman could be having heart trouble. She could have died. Leon was experiencing SCAD, or spontaneous coronary artery dissection.
Every artery in the body has several layers, and if there is a tear in one of the layers, that then … that can turn into a flap and the tear can spread. Blood can build up behind that flap, or the flap itself can block flow.
A blocked coronary artery? That's a heart attack. Leon worried it might happen again. Yet, doctors told her it was so rare there was no research, so forget it.
It always bothered me. It was the doctors saying get over it.
Instead, Leon got serious about finding answers … and finding other women with SCAD.
So they could do a complete medical review of all of our records. See if they could find any similarities.
Laura Haywood-Cory of Durham, N.C., had been through the same frustrating ordeal. She was one of dozens of patients Leon found online through the group WomenHeart at the website Inspire.com. Leon took her compilation of online patient cases to Mayo Clinic cardiologist Sharonne Hayes, begging her to research SCAD, a condition that may not be so rare after all.
Because I said it's not rare. Right now on the Inspire board there are 68 women who have SCAD. I have this all documented and I can show you.
And we looked at this, and we were excited because not only were we able to get adequate and complete records from all of these patients, we had four from non-U.S., from New Zealand, Canada and England.
Already much has been learned in the Mayo research. Seventy percent of patients are women, one-third of which had their coronary artery tear shortly before or after having a baby. Researchers want to know what role hormonal changes, lifestyle behaviors and family history play in our risk of SCAD.
I think there are families that we have heard from whose loved ones have died from this condition and we're trying to sort out a way to also include them into our study so that that information is not lost.
Often, identifying and recruiting patients for research can be ploddingly slow. This example has experts excited about the potential of social media as a powerful new tool.
I think there's this great pent-up energy among physicians, among patients — especially those with rare conditions that they're itching for this kind of opportunity — and I think we're seeing the start of something that's going to be really big.
For Medical Edge, I'm Vivien Williams.
Approval has now been granted to recruit up to 200 patients with SCAD. A virtual registry will be created to look at DNA markers for a "bio-bank," allowing Mayo Clinic researchers to look for potential genetic connections, links and causes.
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