To make a long story short, Mayo set up a SCAD clinic and an IRB-approved pilot study involving 12 women. Before Mayo researcher Sharonne Hayes could post a recruitment notice, Leon and Haywood-Cory had already identified 18 candidates.
Within six months, Hayes had full medical records including angiograms and echocardiograms from subjects from around the world. Hayes is now on track to develop the first DNA biobank of 200 SCAD patients worldwide, plus 400 of their relatives.
"None of them came to Rochester for primary care," Timimi says. "Now this occurred because they made it happen, not because we made it happen. We were available, and interested in the opportunity, but they drove this research. We didn't." The program has since been featured in the Wall Street Journal.
The final story notes that social media can continue to pay dividends years later. Timimi shared the story of Haley, a 13-year-old who suffered symptoms of nausea, vomiting, and diarrhea. Haley saw more than 50 physicians, "none of whom were able to yield a diagnosis that made sense to her or her mother," Timimi says.