After nearly dying five times, a young doctor learned to treat himself. Now he wants to help others with rare disease

Dr. David Fajgenbaum has nearly died not once, but five times. The cause each time was a rare disorder called Castleman disease, an affliction on the boundary between cancer and an autoimmune disorder. It caused his entire body to swell up. Previously a muscled college football player, he first became bloated, then very thin.

Fajgenbaum, who was in medical school when he got sick, did something extraordinary. He founded a patient advocacy group, the Castleman Disease Collaborative Network. But more than that, he delved into the science of his disease, and proposed the treatment that, after five relapses, has kept him healthy since. It was an existing drug, sirolimus, that no one had thought to use for Castleman disease. Football, he said, helped him deal with the failure inherent in medical research.

Now 34, Fajgenbaum details