Posted in E-Patient

Patients band together via Web, persuading doctors to study their rare condition

See on Scoop.itHealth Care Social Media Monitor

Nefertari Nelson-Williams was about to deliver her fifth child when she suffered a nearly fatal heart attack in 2008.The healthy former model suffered a tear in a coronary artery from a rare condition called SCAD (spontaneous coronary artery dissection) that could have killed her and her baby. “I couldn’t understand how something so rare could happen to me,” said Nelson-Williams, 38, now a freelance writer.

A decade ago, Nelson-Williams and the estimated 25 million Americans afflicted with rare disorders would likely have suffered in isolation, knowing little about their condition and living with fears of recurrence and passing it to their children.

Now, because of a cadre of Internet-savvy SCAD survivors who banded together and mobilized like a team of Navy SEALs, Nelson-Williams has joined an online patient-support community, learned more about her condition, and plans to participate in a patient-driven study to find the causes and cure for SCAD.

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