The story of how Katherine Leon and Laura Haywood-Cory used social media to upend the traditional approach to research in rare diseases with their interest in Spontaneous Coronary Artery Dissection (see background here) is featured in the front section of the current issue of Minnesota Medicine. Here's an excerpt:
In 2003, just two months after the birth of her second son, Katherine Leon experienced crushing chest pain and found herself fighting to breathe. Leon, who was 38 at the time, thought she was having a heart attack. Doctors weren’t so sure, however. After a few days of continuing cardiac symptoms, an angiogram revealed that Leon had spontaneous coronary artery dissection (SCAD), a condition in which a coronary artery develops a tear, causing blood to flow between the artery’s layers, forcing them apart and leading to a blockage that can induce a heart attack. She immediately underwent double bypass surgery. “It’s like being hit by a truck—you’ve been told that you’re healthy, and you have this condition in spite of doing everything right,” says Leon, who is from Alexandria, Virginia. “You think, ‘Why me?’”
Check out the full story of how Katherine and Laura used social networking to connect with others around the world, and read about the initial pilot study and the ongoing SCAD research they inspired, which Dr. Sharonne Hayes, director of the Mayo Clinic Women's Heart Clinic, is leading.
Tags: Patient Involvement