Dr. David Fajgenbaum answers questions from a young woman who has been diagnosed with Castleman disease and her mother in his office at the University of Pennsylvania.

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 his experience in a new book, “Chasing My Cure,” in which he also writes about his mother’s death from brain cancer and the way the disease affected every aspect of his life, including his relationship with his wife. He’s an assistant professor of medicine in the Division of Translational Medicine and Human Genetics at the University of Pennsylvania in Philadelphia.