For many years, Fajgenbaum has been on a mission to find a medication or treatment that will save his life. After five near-death experiences, he's written a book about his journey that is now driving him to help others who are sick. He has chronicled his experiences in his new memoir called Chasing My Cure: A Doctor's Race to Turn Hope into Action. In the book, he talks about being in remission for more than five years thanks to a drug called Sirolimus.
"It was initially developed for kidney transplantation and it had never been used before for Castleman disease, but based on the research I did in my lab, I thought that this drug might work for me," Fajgenbaum said.
Fajgenbaum formed the Castleman Disease Collaborative Network with the goal of finding a cure. He and several other experts have been working feverishly to save lives before it's too late. For Fajgenbaum who now has a wife and baby daughter, the mission of finding a cure is even more crucial. Through his book he wants to give others guidance on how to tackle tough issues when it comes to serious illness.
"I learned so much from my own experience of these ups and downs of battling Castleman disease that I want to be able to share my story with others. They don't have to go through the same ups and downs. They don't have to have their last rites read to them," Fajgenbaum said.
While writing the book, Fajgenbaum was forced to relive some of his darkest hours, but he wants people to know that through it all there is always hope.
"Even when we have really tough challenges in front of us we have reason to be hopeful. We need to take action. We have to turn our hope for the future into concrete action."
The next step in Fajgenbaum's action plan is to help raise awareness for the millions of other patients suffering with rare diseases like Castleman's that have no cure.
"Out of the 7000 rare diseases that affect 30 million Americans 95 percent don't have a single FDA approved drug...and so we need...have a lot of work to do," Fajgenbaum said.
Fajgenbaum will be holding a book signing on Sunday, Sept. 15 at Quail Ridge Books in North Hills at 2:00 p.m. A clinical trial for the drug he is currently taking, Sirolimus, is taking place at the University of Pennsylvania.