[...] McGarry, a mother of two from Naperville, suffered a heart attack a few hours later in an emergency room. She was diagnosed with a rare, often fatal heart condition that can affect otherwise healthy young women.
Stricken in January 2011, McGarry left the hospital after five days feeling isolated and confused. Finding information about the ailment — spontaneous coronary artery dissection, or SCAD — was difficult, and doctors were unable to help, she said.
McGarry eventually discovered a thriving online community that provided details about her condition and, more important, encouragement. With a few clicks of a mouse, she plugged into a wealth of information and support.
A 2011 study by the Pew Internet & American Life Project found that 1 in 5 Americans uses the Internet to find people with similar health concerns.
"We have this ancient instinct to find other people who share our same problems so we can solve them together," said the project's associate director, Susannah Fox. With the Internet, "it's faster and easier, but it's that same old wish."
For patients and those who care for them, social networks can offer solace from what can be a lonely battle for survival, Fox said.
At the same time, patients who organize themselves in cyberspace can offer new opportunities for researchers.
"The real magic happens when someone with a great idea is able to connect with one of these patient groups who stand ready and willing to help," Fox said.Read More