A professor in the Perelman School of Medicine wrote a book about his experience being diagnosed with a rare disease and conducting his own research to try and find a cure.
David Fajgenbaum, who received a Penn medical degree in 2012 and a Wharton MBA in 2015, published his book, "Chasing My Cure: A Doctor’s Race to Turn Hope into Action" in September. The book details Fajgenbaum's research and experience with Castleman disease, a rare disease that attacks the body’s immune system, which he was diagnosed with while enrolled in medical school.
When he relapsed while taking an experimental treatment and learned there were no other drugs in development, he began conducting research on his own samples and was eventually able to find a treatment option that kept him alive.
Fajgenbaum said his goals in writing the book were tri-fold: He aimed to share his experience and life lessons with the world, raise awareness for Castleman disease and rare diseases in general, and highlight his approach to research.
“I learned a lot about life and a lot about living from nearly dying five times,” Fajgenbaum said.
The book also addressed his research approach, Fajgenbaum said. When conducting research on Castleman disease, Fajgenbaum used unconventional methods to establish connections with researchers, health care providers, and patients in the United States and around the world. This collaborative approach ensured the best possible measures were being taken to discover new treatment options and improve diagnoses.
In 2012, Fajgenbaum established the Castleman Disease Collaborative Network, a foundation that seeks to expand research on the disease, spread awareness, and help connect Castleman patients, researchers, and health care providers through a singular database.
“I got sick with Castleman disease, but I created this foundation so that there’s actually something positive that has come from it," he said. “It wasn’t something I found, it was something I created.”
Fajgenbaum said he believes his approach of trying to create positive change in difficult situations can be applied more generally, beyond rare disease research.
“Though my book is about me chasing a cure for my disease, it’s really just a universal tale about getting up and fighting back after life knocks you down,” Fajgenbaum said. “Maybe when we go through tough times we should think about what silver linings we can create.”
Fajgenbaum said he hopes the book will inspire people to turn their hopes into action, just as he has done for himself through his research.
“If we can actually use our hope to inspire action, then I think hope is the best thing in the world,” he said.