Doctor discovers treatment for his rare autoimmune disorder

A doctor in his office.
(Image credit: iStock)

Dr. David Fajgenbaum couldn't wait for someone else to come up with a treatment for Castleman disease, the rare autoimmune disorder he was diagnosed with during his third year in medical school.

Fajgenbaum, 34, was hospitalized four times due to the disease, which caused his immune system to attack his organs. He had to go through chemotherapy in order to survive, and he came so close to death that a doctor once told him to write down his living will. "You learn a lot by almost dying," he told CNN.

Fajgenbaum's mother died of cancer while he was in college, and wanting to find a treatment in her honor, he studied at Oxford so he could learn how to conduct scientific research. Upon enrolling in medical school at the University of Pennsylvania, he decided he would become an oncologist. That changed after Fajgenbaum's diagnosis and his most harrowing hospitalization, six years ago. At the time, he noticed there were red spots on his skin, and when he questioned his doctors, they said they were nothing.

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Once he recovered and graduated from med school, he formed the Castleman Disease Collaborative Network, inviting the best doctors and researchers to work with him. They needed to come up with some sort of a treatment, he decided, and fast. While looking at his medical charts, Fajgenbaum saw that a protein known as VEGF spiked every time he had a flareup of his disease. This protein controls the growth of blood vessels and gets the immune system going, and he wondered if this was linked to the red spots once on his skin. He asked his doctor to prescribe an immunosuppressant, and that did the trick — he's been in remission for five years. Now married, a new father, and a medical professor at the University of Pennsylvania, Fajgenbaum is thrilled to see the treatment working on other patients.

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