Book Excerpt: Macrowikinomics (Part 5)

PatientsLikeMe, a web-based community of patients with rare or life-altering diseases, shows how people can take more control of their health and use collaborative tools in the process

In 1997, Stephen Heywood, a twenty-eight-year-old custom home builder from Palo Alto, California, noticed that he couldn't turn a key with his right hand. A year later, he was diagnosed with Lou Gehrig's disease (also called amyotrophic lateral sclerosis, or ALS). It's a neurodegenerative disease that paralyzes and eventually kills its victim. As soon as the diagnosis was made, Stephen's brothers, James and Ben, both MIT engineers, struggled to learn as much as they could about the disease. But they were stunned by the paucity of information available to them, even as members of the academic community with broad access to information resources. With thirty thousand cases in the United States, ALS is not as common as the better-known multiple sclerosis, but it's just as debilitating. Yet ALS patients had no efficient way to share information about their disease with one another, or with their doctors, so both diagnosis and treatment were delayed. What's more, it was extraordinarily hard to find patients just like Stephen, who by his thirty-fifth birthday was breathing on a ventilator and confined to a wheelchair.

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