Turning Hope into Action: Med Student Finds Cure to His Own Deadly Disease
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When a young medical student learned he was dying, he vowed to "go out swinging." David Fajgenbaum told his relatives he would fight his disease to the bitter end. Along the way, he discovered his own cure. He recounts his amazing story in his autobiography, Chasing My Cure: A Doctor's Race to Turn Hope into Action.
Since his stunning recovery, Fajgenbaum has learned to savor each day like a man living "in overtime."
"When you're in overtime," he told CBN News, "You have to make every second count. It's a sense of urgency that I live with."
"The Beast" Sidelined
Fajgenbaum seemed invincible. Nicknamed "The Beast," he tore-up the gridiron while playing quarterback for the Georgetown University football team.
He then tackled medical school. However, in his third year, the doctor-in-training suddenly became the patient. In a period of just two weeks, he suffered from extreme fatigue, radically swollen legs, and severe abdominal pain. He checked himself into the emergency department of the very hospital where he was training.
"They did blood work and told me, 'David, your liver, kidneys and bone marrow are shutting down. We don't know why. We need to hospitalize you right away,'" he recalled, "It was terrifying."
As David rapidly declined, doctors frantically tried to figure out what was wrong with him before it was too late. His symptoms resembled lymphoma, lupus and a sepsis infection, but all were ruled out. He was placed in intensive care, given blood transfusions and dialysis, but his condition worsened.
Finally, after three months, David's medical team diagnosed David with Castleman Disease, a rare condition that is like a cross between cancer and an autoimmune disorder.
While understanding the cause of his suffering came as a relief to David and his family, their hopes would be dashed upon learning there was no treatment and the disease was fatal in many patients.
It appeared David was one of those patients.
"My family was encouraged to say their good-byes and a priest came in to administer my last rites to me," he said, "I was so sick."
After saying good-bye to his loved ones, David lay alone in his hospital bed waiting to die, reviewing his short life.
"I didn't regret anything that I had done in my life. I didn't regret anything that I had said," he continued, "The things that I regretted were things I hadn't said and hadn't done and wouldn't be able to do," he said, adding, "I mourned that I wasn't going to get married and have a family and experience those special moments."
Surprisingly, a chemotherapy drug given to David a short time earlier started working. He rallied somewhat. But his reprieve would be short. He and his family would endure four more near-death relapses.
"I hoped and I prayed that I would find the right doctor and they would find the right treatment for me," he said.
However, not long after that, doctors informed David they had exhausted every possible treatment and were out of ideas.
"I learned there were no more drugs in development. That there were really no more leads even.
At that point, David realized if a treatment was to be discovered, he'd have to find it himself.
Turning Hope and Prayers into Action
"I said, 'I'm going to dedicate the rest of my life, however long that may be, trying to develop treatments and a cure for this disease,'" he recalled, adding, "The things that I was hoping for and praying for daily: a cure, a treatment, something, I realized that they were not on their way and that they wouldn't happen unless I turned my hope and my prayers into action."
David was given the use of a medical lab where he went to work studying his own disease. He conducted research on his own blood and tissue samples. After one year, he came across something big.
"The immune system is really complex with a number of communication lines. One of them is the M-TOR pathway," he explained, "And I found that communication line was turned into overdrive in my samples."
Armed with that information, David began searching through the hundreds of existing medications for one that targets the M-TOR pathway. He hit the jackpot with a drug called Sirolimus.
"I thought just maybe this drug for one disease could actually help me with my Castleman Disease. And so I started on this drug, Sirolimus, five and a half years ago and now it's been five and a half years that I've been feeling great and in remission," he smiled.
During his remission, he fulfilled the dream he had on his deathbed years earlier by marrying and becoming a father. He hopes his remission is permanent, but isn't certain.
"Unfortunately, it's hard to predict how long these drugs will work," he said, "And if this disease will out-maneuver the drug that I'm on."
David's wife Caitlin is aware of the risk as well.
"It's very cliche, but when you love someone, you love someone," she said, "And you don't pick how you feel about people. And I just knew that I wanted to be with him no matter what."
Since David's breakthrough, about half of a handful of other patients with Castleman Disease have experienced similar success with Sirolimus.
He continues to research treatments and founded a patient advocacy group, the Castleman Disease Collaborative Network which seeks to raise funding and awareness about the disease, which he says is commonly misdiagnosed.
"Patients start out with kind of flu-like symptoms, so night sweats, fatigue, weight loss, that can sometimes progress to noticing fluid accumulating around your body due to kidney failure and liver failure," he continued, "Patients will also have issues with their blood cells so they might have too low of their platelet count, or their red blood cells."
About five-thousand people are diagnosed with Castleman Disease in the U.S. It's one of 7,000 rare diseases that affect 30 million Americans. 95-percent of those do not have a single FDA-approved therapy.
Meanwhile, there are approximately 1,500 drugs that are already approved for at least one disease and may be treatments for cures for thousands of diseases with no approved treatments.
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