Curing His Own Rare and Previously Untreatable Disease

Curing His Own Rare and Previously Untreatable Disease

Major New York Times Story Spotlights David Fajgenbaum's Extraordinary Accomplishments

Penn Medicine Assistant Professor and LDI Senior Fellow David Fajgenbaum is the subject of an extensive Sunday New York Times article chronicling his extraordinary quest to find a cure for the previously untreatable disease he suffers.

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Photo: Hoag Levins
David Fajgenbaum on a recent Wharton School radio show discussing the international research network he organized.

In the middle of his university education, Fajgenbaum, MD, MBA, MSc, was felled by idiopathic multicentric Castleman Disease -- a rare immunologic disease. Near death in 2010, he received the Catholic Church's last rites. He subsequently reached the same brink four more times.

International research collaborative
The Times' magazine-length article detailed how Fajgenbaum organized the globe-spanning Castleman Disease Collaborative Network of researchers and immunology specialists to conduct coordinated research aimed at identifying the biomechanics and potential cure for the deadly disease.

Using his own body as a lab subject, the Perelman School of Medicine and Wharton School graduate, Fajgenbaum discovered T cell-related activity that appeared to parallel his worst Castleman bouts. That led him and his consulting physicians to try a drug used to prevent organ rejection in kidney transplants.

Since 2014, the Times reported, that drug -- Rapamune -- has returned Fragjenbaum's immunue system to normal and kept his disease in remission. Today, he continues his work as the world's most famous Castleman Disease researcher.