They, in turn, shy away from him. The collective symptoms are so distinctive that diagnosis would seem easy. But this neurodegenerative disease, progressive supranuclear palsy, or PSP, is rare. That fact forces Scruggs and other patients into one of the most tortured journeys in medicine. Because their symptoms are unfamiliar, neighbors shun them and doctors dismiss them.
Victims wander for years before finding out what went wrong, and some die never knowing.
Commonly misdiagnosed, they wind up taking the wrong medicines and becoming misfits in support groups for ailments that aren't their own. They find themselves praying that someone famous will come down with the same thing, to boost awareness and research dollars. With PSP and other rare illnesses, those who ultimately reach the right diagnosis discover it leads nowhere. There are no cures and few treatments. Across the country, these circumstances are spurring the formation of dozens of advocacy groups for rare illnesses, as well as expansion drives among older groups.