Local doctor searching for cure to his own rare disease

PHILADELPHIA (WPVI) -- Brought to the brink of death five times, a local doctor has spent the past 10 years spearheading the international search for the cure to his own rare disease right here in Philadelphia.

This Saturday night, Dr. David Fajgenbaum will once again host the Quest for a Cure Gala, raising funds and awareness for Castleman disease and others rare illnesses.

"If you told me when we started this 10 years ago that I would be here, I never would have believed it because of my disease," Fajgenbaum says.

"And if you would have told me about all of the patients' lives that we've been able to save over these last 10 years, I would have told you, 'No way.'"

Castleman disease is rare, but it's about as common as ALS.

The cause and the cure remain a mystery, but Dr. Fajgenbaum and his team are getting closer each day to cracking the code.

Dr. Fajgenbaum designed his own experimental treatment course. So far, it's working.

"Five times I thought that I was going to die from this horrible disease over a three-year period," said Dr. Fajgenbaum. "I'm here now, over eight years later, and really on a mission to say: 'How many more diseases can we do this for? How many more drugs can we use within Castleman disease?'"

"The idea that there's a drug at your local pharmacy that can be helpful for you or someone you love, but we haven't figured that out yet, that's what keeps me up at night. We have to uncover these treatments," said Fajgenbaum.

The annual Quest for a Cure Gala is this Saturday at the Arts Ballroom in Center City Philadelphia.