“I think that our medical structure is set up such that there are people that play various roles, and there are hierarchies and there are ways that things are done. I was already getting entrenched into that hierarchy. It really took a lot to make me really try to take control over my own future. I still didn’t feel like I could make a difference. It wasn’t until I had no more options and everything had kind of failed that I felt I needed to do this.”

~ Dr. David Fajgenbaum

“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.”

More on After nearly dying five times, a young doctor learned to treat himself. Now he wants to help others with rare disease by Matthew Herper via STAT.

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