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David Fajgenbaum played football at Georgetown University, graduated with honors, and earned a master’s in less than a year from Oxford University. He was going through medical school rotations (where friends nicknamed him “the Beast” because he could bench-press more than some pro football players) when he started feeling unusually fatigued. Within days, he was admitted to the emergency department of the hospital where he had just been seeing patients; his body quickly deteriorated to the point where he was bloated with 90 pounds of fluid and his organs were failing. He was in and out of consciousness, barely able to think. But he hoped for the chance to make some things right, and to beat the mysterious ailment that so suddenly had taken him down.
He did get another chance; in fact, over time, he had four more chances to come back from repeated visits to death’s door and to fight back. Fajgenbaum was diagnosed with Castleman disease in 2010, a rare disease that had been named in the 1950s but still was little-known or understood. He set his “laser focus” to finding a treatment that would help him live well enough to help others who faced the same diagnosis.
In less than a decade, he has not only found a medication that has kept him in remission for more than five years, but he has founded the Castleman Disease Collaborative Network to “accelerate research and treatment.”
Chasing My Cure is the story of a young doctor’s own battle with a disease that nearly killed him several times and his drive to not only help thousands of other people with the disease but even to change the traditional system that has made it so difficult for researchers and doctors to make significant progress in finding causes and cures for other so-called orphan diseases. At the same time, Fajgenbaum describes how through his experience he found ways to better connect with loved ones and find happiness. He talks throughout about hope and that it’s not what he had thought it was when he was younger: that somehow, somewhere, Santa and his elves are working on solutions to problems, such as cures for all diseases, and they just needed to be wished for or searched for hard enough. Instead, hope is power that should lead us to action to make things better for ourselves and others. And that is certainly what he has done.
I was moved by Fajgenbaum’s experiences, by his grief at the loss of his mother to cancer and then the pain and fear he and his family endured each time Castleman disease came roaring back into his life. I was particularly fascinated by his explanations of the thought processes he had as he researched and worked with a few specialists to discover potential causes and possible drug treatments. His acumen in medicine and science is evident and admirable. And then his work on rethinking how foundations like the CDCN and medical research into many diseases can function more efficiently and collaboratively (see, it’s in the name!) also left me impressed at the logic and strategy behind it.
Fajgenbaum’s story is fascinating not just because of what he brings to the table as a patient, bright doctor and researcher and even businessman, but because of how much he’s done in a short time to make tremendous progress. His story is recent and ongoing, and I’ll be eager to see more how it plays out in the next five or ten years.
Rated: None.
*I received an ARC of this book in exchange for my honest review.
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