The Blueprint to Facing a Rare Disease

When a 20-something med student started to experience overwhelming fatigue and organ failure out of nowhere, he eventually took matters into his own hands.

Dr. David C. Fajgenbaum, who is now an assistant professor of medicine at the University of Pennsylvania in the Center for Study & Treatment of Castleman & inflammatory Lymphadenopathies, was diagnosed with Castleman disease — a deadly illness that presents like a mix of cancer and an autoimmune disorder.

After relapsing four times after his initial diagnosis and realizing after chemotherapy that the available treatments were not going to be enough, Fajgenbaum eventually evaluated his own samples to find a cure for his rare disease. With his radical approach to conducting original medical research, he identified and prescribed himself his own treatment that has brought about a lasting yet tentative remission.

Fajgenbaum went on to co-found and become the executive director of the Castleman Disease Collaborative Network, which uses a network of physicians, patients and other stakeholders to crowdsource ideas about what should be studied in clinical trials and who would be best suited to conduct the research. He also recently authored a memoir, titled “Chasing My Cure.”

More recently, he served as the special guest speaker at CURE’s MPN Heroes celebration, held to honor those individuals who excel in their efforts to raise awareness and education around myeloproliferative neoplasms.