Slate has a dramatic story of how a mother’s Facebook network helped spot – rapidly – Kawasaki Disease, a rare auto-immune disease that the family’s doctors had initially missed.
Her social network contains some medically knowledgeable people. (Do you have any docs, nurses, etc in your Facebook circle?) Note that friends’ availability is sometimes far greater than a doctor’s office.
Read how the diagnosis unfolded. And read what her family physician said, when she called from the E.R.:
“You know what?” he said, “I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook.”
Then this, as the crisis wound down: (bullets added)
“Facebook transformed from my son’s inadvertent lifesaver to the most valuable tool in my arsenal:
- to keep family and friends abreast of his ever-mutating condition without having to steal time and emotional energy away from him;
- to pepper [her FB friends] Beth, the pediatrician, and Emily, the pediatric cardiologist, with an endless series of random questions with which I was too embarrassed to bother my own doctors;
- to feel connected—profoundly connected—to the human race while living, breathing, eating and sleeping in the isolating, fluorescent-lit bubble of a children’s hospital ward, where any potential humans I might have “friended” on our floor were too distraught over the fates of their own children to make any room in their hearts for strangers.”
Health is social. And social networks let us bring real value to care episodes, let us be engaged in our families’ care, beyond what our clinicians provide.
Thanks to my college classmate Bill Reenstra for forwarding this item from our fellow alumnus David Grosof, who was at a talk I gave at our alumni club Tuesday in San Francisco.
*This blog post was originally published at e-Patients.net*