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Show 1193: How a Doctor Faced Down His Rare Disease

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David Fajgenbaum, MD, is racing to develop a cure for his rare disease and help other patients with rare diseases as well.

A healthy young medical student, David Fajgenbaum, had been a student athlete in college and maintained his extraordinary level of fitness through much of medical school. His friends called him The Beast because of his athleticism. When he suddenly found himself deathly ill with an undiagnosed condition, it was a real shock.

Eventually, his doctors figured out what was wrong with him. It was an unusual variant of a rare disease called Castleman disease. After it nearly killed him, he started studying idiopathic multicentric Castleman disease to find out what was known about it. He was dismayed to learn that very little is known, and hardly any researchers were working on developing a cure.

Turning Hopes and Prayers into Action:

Dr. Fajgenbaum realized that if he wanted to be able to achieve his life goals (starting with living another week), he would need to jump into research himself. The drug that the FDA had recently approved for Castleman disease did not benefit him for very long. This setback emphasized that was time to turn his hopes and prayers into action.

Dr. Fajgenbaum started the Castleman Disease Collaborative Network, to bring researchers working on the condition into contact with each other and with physicians and patients who need the fruits of their research. He also began his own research program at the University of Pennsylvania.

Putting an Old Drug to a New Use:

Dr. Fajgenbaum realized that a 25-year-old anti-rejection drug called sirolimus might be able to activate appropriate pathways in his body to fight Castleman disease. That turned out to be true. Now he is preparing to run a clinical trial to see if sirolimus can help others with this rare disease. The drug is also known as rapamycin. Dr. Fajgenbaum wants to turn hopes and prayers into action. Ultimately, he will not be the only one to benefit. So will many other patients who currently have nowhere else to turn.

This Week's Guest:

David Fajgenbaum, MD, MBA, MSc, is a physician-scientist at the University of Pennsylvania, where he is one of the youngest individuals ever appointed to the faculty. Co-founder and executive director of the Castleman Disease Collaborative Network, Dr. Fajgenbaum is also a patient battling the same disease that he studies and is alive thanks to a drug that he identified and began taking. Dr. Fajgenbaum has been profiled on Forbes “30 Under 30” list and a cover story by the New York Times, among others. He is the author of Chasing My Cure: A Doctor's Race to Turn Hope Into Action. You can visit https://chasingmycure.com/ for more information. The photograph of Dr. Fajgenbaum is by Rebecca McAlpin.

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