People who suffer from rare diseases often find comfort, information and empowerment through online peer networks. And some patients have gone as far as to drive scientists to study their condition and even investigate potential treatments for it. In today's Philadelphia Inquirer, an article reports on a group of women who found each other through the Web and formed an action-oriented community to combat SCAD (spontaneous coronary artery dissection), a disease they share.
The article details how the self-described "SCAD Ladies" (including past Scope columnist and Durham, N.C., resident Laura Haywood-Cory) helped spread the word to researchers that SCAD needed to be better understood and studied:
"We thought if we could find these people and get their stories out, doctors would see that this is something that should be studied and researched,“ said [patient Katherine Leon of Alexandria, Va.], who enlisted Mayo Clinic cardiologist Sharonne Hayes [MD] to study SCAD.
….
"We now have a research foundation and Dr. Hayes let me know that the pilot study was successful and the Mayo Clinic approved the clinical trial. The greatest value of being in this group is that it strengthens each of us the minute we know there's someone else out there."
The current Mayo study to learn more about SCAD includes more than 200 participants and uses a virtual patient registry and DNA testing to track the condition. And researcher Hayes said she and her colleagues have "unquestionably benefited from the organizational and leadership skills and frankly, the courage of Laura [Haywood-Cory] and Katherine [Leon] and the willingness of the other women to share themselves with us. This is one of the most gratifying things I've done in my career."
Previously: Dr. Google: Threat or menace?, Using social media to study rare diseases and Survey shows patients with rare diseases and their caregivers are avid Internet users
Photo by LaMenta 3
