The Physician Who Cured Himself

— How David Fajgenbaum, MD, treated a rare disease


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As a medical student, former college quarterback David Fajgenbaum, MD, MBA, MSc, now at the University of Pennsylvania in Philadelphia, was at the peak of his health and physique when he suddenly came down with a mysterious disease that, within weeks, led to multiple organ system failure. Fajgenbaum found himself on the brink of death over and over again in the intensive care unit, at one point receiving his last rites, with all of his doctors baffled about the cause of his illness.

When the culprit was eventually found to be Castleman disease, a rare disease entity that to this day defies categorization, he took matters into his own hands, researching and testing treatments on himself before finally discovering his own cure.

Today, Fajgenbaum is not only the co-founder of the Castleman Disease Collaborative Network, but is leading efforts to discover therapies for other rare diseases. He is the author of the 2019 memoir Chasing My Cure. In this riveting conversation, Fajgenbaum shares his incredible, inspiring story to turn hope into action.

In this episode, Fajgenbaum talks to Henry Bair and Tyler Johnson, MD, about:

  • 2:13 How the loss of his mother to cancer led Fajgenbaum to pursue a career in medicine
  • 6:04 The rapid deterioration from peak physical health to multiple organ system failure that struck Fajgenbaum
  • 12:59 Fajgenbaum's reflections on the terror of his unknown affliction and how he maintained resilience
  • 21:47 How a brief remission gave Fajgenbaum an opportunity to turn passive hope into active hope
  • 24:47 How a relapse led to a series of experimental treatments and a realization that his cure might already exist
  • 36:42 How deep research and self-experimentation led to a breakthrough
  • 42:02 Fajgenbaum's nonprofit Every Cure and its mission to discover new uses of existing drugs
  • 47:03 How Fajgenbaum feels when he cares for patients in similar plights to his
  • 51:37 What clinicians can do to comfort patients even when treatment options are limited
  • 53:25 Advice to clinicians and students who are interested in medical research
  • 56:32 Lessons on presence and compassion that Fajgenbaum has learned from having been both a physician and patient

The following is a partial transcript (note errors are possible):

Bair: I'm really excited to explore your journey and your battle against Castleman disease. But before we get into all of that, can you share with us what drew you to a medical career in the first place?

Fajgenbaum: Sure. So I had always been really interested in health, exercise, diet. I actually, I dreamed of one day playing college football. That was sort of what I thought about as a kid, but I never really knew that I wanted to go into medicine until I went off to college.

And shortly after I got to college, my mom was diagnosed with brain cancer and that experience of her diagnosis with brain cancer and then watching her battle over the next 15 months really was what drove me to say I want to dedicate my life to searching for treatments for people like my mom, to take care of people like my mom. And so it was that experience as an 18-year-old freshman in college that made me say, this is all I want to do and I'm going to dedicate the rest of my life to trying to find treatments for patients like my mom.

Bair: So did you want to become an oncologist? Going to medical school?

Fajgenbaum: That's right. I wanted to be an oncologist. And I was, I guess you could say, well, on my way, when all of a sudden, as you know, I became the patient myself.

Johnson: So, David, before we go to talking about you becoming an oncologist, specifically, if we can just back up for a second. You know, we've talked to a lot of people, of course, who are healthcare practitioners, a lot of doctors in particular, and other healthcare practitioners on the show. And many of them have origin stories that involve some close scrape with illness when they were young, whether it's in themselves or in a family member.

But we've also talked to some people who are not directly in medicine, and some of them also have an origin story that involves a close grip with illness when they were younger. But it's just so interesting to notice that many of the people who end up not going into healthcare say, oh my gosh, you know, I was really sick or my family member was really sick or what have you. And after this intense experience with the medical system, the last thing I wanted to do was go work in the medical system for the rest of my life.

And then there are these other people who have that same kind of close scrape. And yet, what it does for them is it actually catalyzes the desire to go into medicine, like that's the very thing that they bring out of that kind of experience, which is just to say that having that kind of experience when you're young can cut both ways.

And so I guess I'm just wondering, before we talk about the details of your medical career and what you ended up specializing in, can you just talk to us about what was it about that experience which came at a really transitional time for you, right? Like you're sort of just leaving the nest and just establishing yourself on your own, and then you have this devastating experience with someone who you love so dearly. What was it about that experience that ended up catalyzing you then wanting to go into medicine?

Fajgenbaum: Yeah, and it's such an important question because I have friends who, as you said, gone through similar sorts of experiences and maybe taken a different path. For me, I think that as a freshman in college, you know, knowing my mom was sick with cancer and visiting her most weekends when I was in college, when I was at school, being able to take pre-med classes made me feel like I was like doing something directly for someone like her in the future. It was this sort of feeling that like, if I'm going to be away from home and I'm not going to be with her, like, let me make sure that the time I'm away from her is towards the service of someone like her in the future or maybe her, you know, of course I hoped that she would live longer than a year.

And so, I think for me, that's what it was. It was that if I'm going to not drop out of school to spend time with her and the rest of my family while I'm here, I want to be doing something that's sort of in her honor. And so it was very much this connection to her. And then I just found that I love science and medicine, too.

For the full transcript, visit The Doctor's Art.

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