Late Friday afternoon on Dec. 4, 2014, Stephen Schroeder was waiting to board his packed flight from Philadelphia to Las Vegas for a much anticipated long weekend with his son when his cellphone rang. On the line was an unexpected caller: his doctor, reporting test results sooner than Schroeder had expected.
Listening intently, Schroeder was flooded with disbelief as he struggled to comprehend what he was hearing. Using the lip of a trash can as a writing surface, he scribbled notes on the back of his boarding pass, making the doctor spell out each unfamiliar word. Then he sent a terse text to his wife, who was at their home in the Philadelphia suburbs, and got on the plane.
Onboard, Schroeder, then 55, fired up the balky in-flight Internet, desperate for information.
What he read over the next five hours left him alternately terrified, stunned and then, as denial took over, skeptical. "I kept thinking this must be some kind of really stupid mistake," he recalled. "The diagnosis had to be wrong."
Spokane sales manager Steve Schroeder, along with his doctors, thought he had a bad case of jock itch for more than a year. (Courtesy of Steve Schroeder)
Schroeder would discover that the pesky rash he and his doctors had dismissed as inconsequential would take over — and threaten — his life.
The experience would provide a crash course in the importance of finding experts who could provide appropriate treatment, in the necessity of learning as much as possible about a disease, and in the loneliness of coping with a diagnosis so rare it lacks a support group.