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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.


He sat down with STAT to talk about what he’s learned, and about the potential for other drugs that are already sitting on pharmacy shelves to help patients with rare diseases. The interview, edited for length and clarity, follows.

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  • Having retired late last year from 33 years in pharmaceutical research, I thought that one part of NIH announced a couple of years ago that they were investigating approved drugs for other uses, but possibly only for reported off-label uses that hadn’t been adequately studied. I know that one project was adding data on how well SSRI antidepressants worked to reduce hot flashes in menopausal women with a focus on drugs that were or would soon be off patent in hopes they would also be more affordable.

  • What a story. Thank you and congratulations on you 51/2 year remission. Makes me think that in today’s forward thinking world, particularly in science, technology and medicine, that looking back might also find more answers. Aren’t we also supposed to recycle, reuse and repurpose? What better place to consider the potential benefits than in medicine.

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