How a Rare Disease Patient Became his own Doctor

Uplifting Athletes grant winner Dr. David Fajgenbaum on how patients can battle their disease.

Dr. David Fajgenbaum, Uplifting Athletes Young Investigator Draft grant recipient
Dr. David Fajgenbaum, who received a research grant at the 2018 Uplifting Athletes Young Investigator Draft presented by CSL Behring, at work in the lab. Photo Courtesy: David Fajgenbaum/University of Pennsylvania

Few people can identify with the struggles of living with a rare disease like Dr. David Fajgenbaum.

An Assistant Professor of Medicine at the University of Pennsylvania, Dr. Fajgenbaum has Castleman disease and is also one of the leading experts treating the rare condition that has similarities to autoimmune disorders and cancers.  After being diagnosed with Castleman as a medical student in 2010, Dr. Fajgenbaum eventually took charge of his treatment and was able to put himself into a remission that has lasted since 2014.

His story was much talked about in medical circles before gaining global attention in outlets such as The New York Times and NBC’s “Today” show. Dr. Fajgenbaum has made it his mission to help others suffering from his rare condition. He co-founded the Castleman Disease Collaborative Network in 2012 and leads Penn’s Castleman Disease Center.

Last year, the doctor received some vitally-important recognition in the form of a research grant from Uplifting Athletes at the inaugural Uplifting Athletes Young Investigator Draft presented by CSL Behring. With this year’s Young Investigator Draft set for this Saturday , we caught up with Dr. Fajgenbaum to get an update and some advice for fellow rare disease patients.

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Vita: When you first knew you had Castleman disease, you were able to use your medical background as an asset in your care. What’s your advice for other rare disease patients who are looking to take action on their condition but don’t have your same experience?

David Fajgenbaum: Before I got sick, I think I subscribed to the notion that there must be researchers out there working on every disease. When you live under that assumption as a patient, you ask yourself, “What can I actually do to make a difference if there's already this team of people that are working on it?” But when I became sick and began looking under the hood in Castleman disease and many other rare diseases, what I learned was that most conditions don't have a group of people collaborating and working together. They don't have the resources they need. So there are opportunities for us to actually have an impact on how we do and how patients in the future diagnosed with our diseases will do. That could range from fundraising to coordinating researchers to building a community of patients. The reality is that every patient with a rare disease can be a part of those sorts of efforts.

Your story has garnered a lot of media attention over the past several years, which may have raised the profile of Castleman disease. Why is spreading awareness such a crucial part of helping rare disease patients?

Media exposure can really help with putting a disease at the top of a physician’s mind when they’re thinking through what their patient could have. It’s hard to quantify the effect of awareness when it comes to research, but a great example of something that worked is the ALS Ice Bucket Challenge. There was tremendous awareness raised and really important research was done as a result.

You recently experienced a personal milestone in becoming a dad, how do you balance spending time with your family with managing your condition and conducting important research for Castleman patients?

Finding balance is probably the most difficult thing for me. You broke it up appropriately into the three realms of my life. There's managing my disease, there's fighting it from a scientific perspective and there's the people that I love: my wife and daughter. I've kind of cut out everything else. Basically, I don't do anything that doesn't fall in those buckets because those three buckets are all so important to me. But I’ve found out that even when you cut everything out except your health, fighting the disease and being with people you love, it's still tough.

You had the chance to play football in college at Georgetown. Did that make last year’s research grant from the Uplifting Athletes Young Investigator Draft a little more personal for you?

Absolutely. There's a really wonderful Uplifting Athletes chapter here at Penn and I got the chance to work with (Uplifting Athletes Founder) Scott Shirley and Penn Defensive Coordinator Bob Benson, who was my head coach when I was at Georgetown, to get it off the ground.

Coach Benson got in touch when I was so sick and I was just starting to get better and asked what he could do to help. I told him that I thought Uplifting Athletes would be a great opportunity to help engage Penn football players and they've done an awesome job with their chapter. It’s particularly exciting to know that some of the grant funding came from fundraisers that are done by the Penn chapter. Beyond Penn, Uplifting Athletes is a great way of harnessing the power and the enthusiasm and energy of college football to do good with something that was really near and dear to my heart.

Tickets for the 2019 Uplifting Athletes Young Investigator Draft presented by CSL Behring this Saturday are available here.