Rare diseases are hardly rare — according to the National Institute of Health (NIH), there are approximately 7,000 rare diseases affecting 25 – 30 million Americans, roughly 1 in 10. Dr. David Fajgenbaum is one of them, currently in remission from Castleman disease — a rare disorder causing an overgrowth of cells in the lymph nodes.
In this episode of Chatter That Matters, Dr. Fajgenbaum discusses why a potential drug may already exist for rare diseases. A doctor, advocate and patient, Dr. Fajgenbaum spent years searching for a cure for Castleman disease, working on the assumption that a drug – developed for other purposes — may already exist to save him.
More than looking for a needle in a haystack, Dr. Fajgenbaum describes his pursuit as potentially “looking through a haystack where there is no needle.” Liked to a Hail Mary pass in football vernacular, Dr. Fajgenbaum’s long shot paid off — he discovered a drug meant to prevent organ transplant rejection ultimately put his disease into remission, where it has remained for more than 8 years.
Dr. Fajgenbaum shares his remarkable story with Tony Chapman, recounting his terrifying hospitalizations and near-death experiences and the strength he pulled from his family — including his mother who died during his first year of college and remains a source of courage and resolve. Today, Dr. Fajgenbum is married to his high school sweetheart and father of 2 young girls, who inspire him every day.
He describes how he came to form the Castleman Disease Collaborative. Network (CDCN) with the goal of connecting people from around the world — and instead of researchers competing against each other, coming together to explore ideas and figure out solutions. This teamwork, which involves the collaboration of individual experts (not unlike a football team), has been a game-changer in the research and treatment of rare diseases.
Feeling he owes a debt to the universe, Dr. Fajgenbaum feels the only way he can come close to repaying it is to figure out more drugs can be repurposed to save the lives of others. His is a story of hope, creativity, innovation and teamwork — and one you won’t want to miss.
Tony Chapman created the Chatter That Matters podcast to counter the storm of negativity and impossibility with true stories of ordinary people who do extraordinary things. He chats with Olympians, Advocates, Celebrities, Leaders, and people who battled what seemed like insurmountable odds.
In doing, listeners hear life lessons that inspire all of us to do more and to be more, to help us get to where we need, want and deserve to go. RBC is the presenting sponsor.
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