When my cousin was a little over one year of age, her parents discovered that she couldn't walk. An otherwise bright and happy child, she was facing a life of physical therapy aimed at treating symptoms. Eventually, who knows, a nice institution with others just like her. My aunt wasn't going to give up looking.
She stumbled on a book written by this American physical therapist, who maintained that a brain injury was to be treated at the brain level, where the cause resided.
All of a sudden, my cousin had access to a different kind of neurological development treatment, one that would allow her to walk 9 years later. In the process, our family was transformed. Partly by finding a physical support network of other families with whom to share visits, key learning, and war stories.
Fast forward to six years ago. A colleague tells me about the community of people and their families who are dealing with epilepsy, just like her family. At the time, it was her best resource and support group, the go-to place for finding out what people have tried, and what has worked for them.
Parents know what's going on with their children. We know what we feel, when something is off, and we're willing to share to find out what that is. Brain scientist Jill Bolte Taylor lived to tell us an amazing story. Thanks to her testimonial, we know more about what may happen.
We're not so patient when it comes to our health, we want to participate in driving what happens next. And so we should. The data in this video is over a year old. The numbers may be higher today.
Are health care organizations equipped to deal with this new reality?
According to Ed Bennett’s Hospital Social Networking List, only 762 of the more than 5,000 hospitals in the U.S. have some social networking presence. Demand for health-related online information and support is strong and will only be increasing.
Yesterday, Mayo Clinic announced the creation of a Center for Social Media to accelerate effective application of social media tools throughout Mayo Clinic and to spur broader and deeper engagement in social media by hospitals, medical professionals and patients to improve health globally.
See the Q&A on WSJ health blog.
My aunt found a book had the answer she was seeking. It was a forum board for my colleague. The support mechanism for you or a loved one may be a community self-organized around a specific problem, or the blog of someone with the courage and the desire to share their experience.