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Show 1193: How a Doctor Faced Down His Rare Disease

David Fajgenbaum, MD, is racing to develop a cure for his rare disease and help other patients with rare diseases as well.
David Fajgenbaum for Wharton Magazine
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How a Doctor Faced Down His Rare Disease

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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.

Listen to the Podcast:

The podcast of this program will be available the Monday after the broadcast date. The show can be streamed online from this site and podcasts can be downloaded for free. CDs may be purchased at any time after broadcast for $9.99.

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About the Author
Terry Graedon, PhD, is a medical anthropologist and co-host of The People’s Pharmacy radio show, co-author of The People’s Pharmacy syndicated newspaper columns and numerous books, and co-founder of The People’s Pharmacy website. Terry taught in the Duke University School of Nursing and was an adjunct assistant professor in the Department of Anthropology. She is a Fellow of the Society of Applied Anthropology. Terry is one of the country's leading authorities on the science behind folk remedies. .
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I think what Candice meant was that although you named the disease, you did not say how the disease affects the body and its symptoms. That would have been of interest.

Is this the same drug being studied in the dog longevity project at U of Washington?

Is this the same drug being studied for longevity at University of Washington ?

Hi Joe and Terry,

Thank you for Dr. Fajgenbaum’s story in his struggle with Castelman disease. I was fascinated to hear about how the treatment of the acute stage with powerful medicines saved his life. However, it looks like long-term prognosis for this disease is not good.

Also, the side-affects of sirolimus and other immuno-suppressant drugs can be very challenging. They include hypercholesterolemia, hypertension, weight loss, digestive difficulties and the list goes on at length. As additional meds are added to a patient’s regimen the picture gets a lot more complicated.

The long-term management of this disease is what I’m thinking about. Dr. Fajgenbaum and his colleagues may find a cure, but I’m skeptical that drug therapy would ever be sufficient to provide complete efficacy. Diseases like this may well be far more complex than a heavy-handed immuno-suppressive drug approach can hope to address. Besides, continuous immuno-suppression, of course, makes the body more susceptible to other conditions.

This is where a Ayurvedic and allopathic team approach may offer great promise. While strong pharmaceuticals can suppress disease symptoms, their side-affects might best be treated with a powerful, highly tuned regimen of food, herbs and life-style that balance the systemic reactions of the body to strong medicines.

Ayurveda looks at the qualities of disease presentation: hot/cold, wet/dry, heavy/light, gross/subtle, dense/flowing, static/mobile, dull/sharp, soft/hard, smooth/rough, cloudy/clear. Introducing the opposite qualities alleviates symptoms and balances the system.
Foods, herbs and sensory treatments are much easier to use and balance than multiple drugs and therefore would likely make disease management easier. This may seem simplistic, but this is often the way pharmaceuticals address symptoms, especially with drugs that are developed from plant medicines.

I would love to hear you talk about the possibilities of such a partnership. The possibilities are tantalizing.

I just finished Dr. Fajgenbaum’s book, and it was a fantastic read. Can’t wait to hear his interview!

What is this disease?

You never said what the disease was or did to the body. If you had explained the disease the article would have been interesting.

Candice, if you go back and reread the article you will see that it is Castleman Disease. Be sure to listen to the podcast so you can hear our interview with Dr. Fajgenbaum. The show airs live on December 21, 2019 and the podcast will be available on Monday, December 23, 2019.

This is medicine at it’s finest. Nothing motivates like a personal threat to one’s life and well being . The choice was simple cry and surrender to a fate or engage in a heroic battle with literally everything is on the line. Doctor David Faigenbaim I salute you. Your attitude may not only aid in cure for what afflicts you but improve modern standard of medicine in general. We have gotten away from the pureness of Socrates’s thinking with our shiny research toys. It is our focus attitude that really carries us forward. The People’s Pharmacy program does a similar approach for all of us. I call it Eyes Wide Open View.

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