Doctor with Castleman Disease Writes Book About His Search for a Cure

Patient Worthy has written extensively about Dr. David Fajgenbaum, who has made it his life’s mission to find a cure for Castleman Disease.

Dr. Fajgenbaum is not only diagnosed with the rare disease, but because of it he has been on the brink of death five times!

But he has not only bounced back and has fueled himself to find a cure; he has also written a book about his experience and work, aptly titled Chasing My Cure.

What is Castleman Disease?

Castleman disease is a rare disorder that comes in two forms. Both forms cause abnormal cell growth, creating non-cancerous tumors and lymph node enlargement that affect the disease-fighting lymphatic system.

However, in unicentric Castleman disease, there is only one solid growth localized in a solitary lymph node. The more lethal form of Castleman disease (multicentric) occurs when these growths are widespread. Because people with Castleman disease are often asymptomatic or exhibit common symptoms like fatigue, weight loss, and fever, Castleman is easily misdiagnosed as other associated lymphatic disorders.

To read more about Castleman disease, click here.

Chasing My Cure

His book is called Chasing My Cure because he has dedicated his life to finding exactly that — a cure for Castleman! That work is being done with a team of doctors and researchers at the labs on the campus of the University of Pennsylvania, his alma mater.

Dr. Fajgenbaum designed his own experimental treatment course, and so far, it’s working. He’s been in remission for five and a half years.

“I don’t know if this disease will come back tomorrow or the next day,” he says,” but I live with this incredible sense of gratitude.”

Check out this Today Show segment that he was featured in, and click here to learn more about his book!


Read any good books about a rare disease or general health? Tell us and the Patient Worthy community about it!

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