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Rare Disease Hunter Dr. David Fajgenbaum Takes on COVID-19

University of Pennsylvania research team examines the “cytokine storm” in pursuit of effective treatments.

Dr. David Fajgenbaum, Uplifting Athletes Young Investigator Draft grant recipient
Photo Courtesy: David Fajgenbaum/University of Pennsylvania

Dr. David Fajgenbaum, known for finding a treatment for his own rare disease, is now helping doctors understand “cytokine storms,” an immune system overreaction experienced by some of the sickest patients battling COVID-19.

Cytokine storms also occur in patients who have Castleman Disease, a group of inflammatory diseases that can be fatal. Fajgenbaum is a patient and nearly died of the rare disease. While the immune system should snap into action to fight infection, a cytokine storm goes too far and can harm the body, causing fever, organ failure and even death.

Fajgenbaum and a coauthor published new findings about cytokine storms in the Journal of Clinical Investigation Insight, Penn Medicine News announced earlier this month. People who have Castleman Disease can be asymptomatic and have “flares.” By comparing blood samples from Castleman Disease patients in both states, the team was able to look for differences in their immune cells. The study built upon previous research by finding that a particular group of cytokines were highly active when the patient experienced a flare in symptoms.

"With (idiopathic multicentric Castleman Disease), just as with COVID-19, it is the body's hyper-response that's deadly rather than the disease itself, and this study gives us new clues about why the immune cells are out of control and what we can do to rein them in," Fajgenbaum, the study’s lead author, said in a news release.

The research was funded by the Castleman Disease Collaboration Network, the National Heart, Lung and Blood Institute, the Hematological Malignancies Translational Center of Excellence of the Abramson Cancer Center and the rare disease nonprofit Uplifting Athletes. CSL Behring has been a supporter of Uplifting Athletes and previously interviewed Fajgenbaum about his personal and professional battle against Castleman Disease.

Listen to the World of Promise podcast interview with FajgenbaumFajgenbaum recently wrote a book, “Chasing My Cure,” and this month was interviewed on National Public Radio's Fresh Air.