Social networking for patients

Invaluable for patients

Cathy Stillman-Lowe, a volunteer health writer, came across her first online patient group—a Yahoo chat forum run by the Depression Alliance—back in 2005. “It was a very rudimentary group,” she explains. “It was moderated by a part time volunteer, which was tricky when people had those 3 am panics. I’m now part of Bipolar UK’s e-community. The chat rooms are moderated at all times, and there’s a red panic button you can press if someone says they’re going to commit suicide, and they’ll contact them and help.”

Today social media have become invaluable for many patients, especially those with unusual or rare conditions. Irenie Ekkeshis was diagnosed with acanthamoeba keratitis, a rare amoebic infection of the cornea,1 in January 2011. “For rare diseases like mine no offline community existed,” she told The BMJ. “Most of the information I could find was either inaccurate or terrifying. But I found a Facebook group, with only 38 members at the time, and the relief was enormous. I was so happy to connect with someone, to share the same emotions and experiences, the same anxiety and frustration and shock in a normal, accessible way.”

Joanna …