Hope into Action

In Do, September 2019by Mandy Howard

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When Dr. David Fajgenbaum was a medical school student, he found himself suddenly and critically on the receiving end of care. Eventually diagnosed with a deadly subtype of Castleman disease, a rare disorder characterized by immune system hyperactivation and attack of vital organs, Fajgenbaum nearly died five times in the span of three years. 

Throughout the early stages of his illness, Fajgenbaum witnessed firsthand the shortcomings of the world of biomedical research and he decided to do something about it. His book, “Chasing My Cure,” is the story of how he turned his hope to survive into a mission. 

Why did you write “Chasing My Cure”?

It took being on my death bed to learn critical [life] lessons. I wanted to share what I learned about life so [readers] don’t have to wait until [they’re on their death bed] to learn them. 

What do you hope people will take away? 

Wanting to turn hope into action is the number one thing. If we put our minds to something we can accomplish more than we could ever dream. When I started doing research [on Castleman disease] I never thought I would be on a drug, based on my work, or that my life would be extended by my work. I wouldn’t have thought that was possible, but I wanted to go out swinging. This has made me realize that the impossible, or what seems impossible, is actually possible if you turn your hopes into action.

What role does Raleigh play in your story?

There’s a special culture in Raleigh of being there for one another and a real expectation that we will help one another in times of need. I’ve loved the [several other] places I’ve lived but I don’t think anywhere is there more of a sense of “we should be there for one another during tough times” than there is in Raleigh. 

You co-founded the Castleman Disease Collaborative Network to pave the way for a cure. How does that work extend to other rare diseases? 

I hope it will motivate others to think about what we call the “collaborative network approach.” Rather than hoping for a researcher—somewhere—to come up with a right solution, it’s about building a community of physicians, researchers, and patients and harnessing that community to identify the right solutions. There are 1,500 drugs that are already FDA-approved for about 2,500 diseases. But there are another 7,000 diseases that don’t have a single FDA-approved drug. How many more drugs that were developed for one thing may be life-saving drugs or cures for one of those 7,000 that don’t have any solutions right now? (Editor’s note: Fajgenbaum is currently healthy due to a drug not originally used or approved for treating Castleman). We need to continue to develop new drugs, but we also need to think about how we can leverage existing drugs that are already available. 

Your book touches on humor and faith. Did these help you stay strong through the hardest times?

It’s critical when you’re dealing with difficult life experiences to have a strong support system. Is it, literally, your sisters and your dad holding your hand? Is it faith and belief in God being there to support you and help you through? I don’t know if it’s as recognized, but the power of humor and trying to find positivity in dark times can be a source of strength as well—at the very least, a coping mechanism. For me, it was a combination of all three. It’s important for anyone dealing with life’s challenges to find those supportive resources that speak to you. None of us can get through tough times alone.

You’ll be speaking at Quail Ridge Books on September 15. Given your connection to Raleigh, how much does that mean to you? 

It means so much to me for many reasons. Quail Ridge Books is right next door to my sister Gena’s clothing store, Gena Chandler. Gena and my other sister, Lisa, and my dad have been rocks in my life. They’ve been so supportive for me. They never left my side while I was sick. And they still haven’t left my side. 

I turn to them every day for advice and support so it’s really special that it’s in Raleigh. It’s also special because Raleigh has this really important place in my heart. I live in Philadelphia—[it] is my new home, but when I think about my home, I think about Raleigh.

In the book, you discuss how your own uncle also received treatment from repurposing a drug. How is his health now? 

Yes, I share about my Uncle Michael’s experience with his diagnosis with Angiosarcoma. His doctor [told] him that there were two options and neither would keep him alive for over a year.

It was actually a Raleigh doctor, a friend of my uncle, who was willing to put in the order to have this additional testing done which then identified a bio-marker for a drug [that was not approved for this cancer]. We tried it on him and he’s doing incredibly well. He’s still doing well in remission and it’s been over two and a half years and his doctors told him he’d have a year to live at the most.

Speaking of your family, the name Dr. Fajgenbaum sounds very familiar…

My dad and uncle are both orthopedists in Raleigh so there are lots of hips and knees walking around in Raleigh operated on by a Fajgenbaum.

How is your health? 

My health is really good. July 5 [2019] marked exactly five and a half years since the last time I was in the hospital. In my first three and a half years, I had five life threatening…frightening episodes. Now it’s been five and a half years without any and I’m so grateful for that.

One thing I wanted to mention that’s not in the book, it’s in the acknowledgments section, but it’s a sobering piece of my journey. A couple years ago, right around the time my Uncle Michael was diagnosed, my brother-in-law was diagnosed with ALS. [It] is an awful disease and he’s been battling it so heroically. So what pushes me every day is to think far beyond me and my experience. [Yes], this is about Castleman Disease [but it’s also about] rare disease more broadly. What can I do as I fight and push for research for Castleman to also help others who are fighting rare diseases to create tools and research environments so diseases like ALS get answers more quickly. 

I’m constantly reminded and think all the time, “yes, we’ve made progress for me and yes, for some other Castleman patients. But we’ve got a lot more work to do.”

Fajgenbaum will be at Quail Ridge Bookstore at 2 p.m. for a special book signing event. For more information, visit quailridgebooks.com.

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