One Doctor’s Fight Against His Castleman: This Time, It’s Personal

Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can.

In a fascinating Science Magazine article, David shares his years-long quest for the cure for Castleman disease, a rare disease that affects the lymph nodes.

He was in the middle of med school when it hit. And though he remained in ICU for 7 weeks, doctors couldn’t figure out what “it” was.

Maybe it’s… no couldn’t be. But what about…? Hm. Source: giphy

Upon diagnosis of Castleman disease, intense chemotherapy began. Doctors didn’t think David would survive, but he was determined. He traveled to meet an expert on the disease and, in the middle of that visit, he relapsed. Chemotherapy held death at bay.

The next relapse changed him. He resolved to spend the remainder of his life “trying to take this thing down.”

And we believe in him! Source: giphy

Since then, David has enrolled in business school, spearheaded the Castleman Disease Collaborative Network, and worked with his doctor on a paper proposing a new model of the disease. Now, he’s a professor at University of Pennsylvania, where he coordinates 12 Castleman studies.

You can read the entire story here.

David’s experience reminded me of another I recently read about in “When Breath Becomes Air,” a memoir by Paul Kalanithi.

At a young age, and on the brink of becoming a neurosurgeon, Paul learned he had very late stage lung cancer. Paul writes honestly and beautifully of the paradoxes he faced: doctor and patient, preserving life and facing death, studying science and searching the soul. Paul died while writing the book.

Perhaps David’s story reminded me of Paul’s book because of their common themes: the distinction between science and the human spirit—the idea that life is about so much more than a disease. Both were successful medical students, studying science at the highest level, when faced with death. Both reacted in ways unexplained by science—David with his super-human drive; Paul with his sincere soul-searching.

As amazing as science is, the human spirit often leaves me even more awestruck.

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