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When Doctors Need Doctors: After Dodging a Death Sentence, Looking for a Cure

Elise Craig | December 18, 2014 | Story Profiles

A lot of physicians say that being sick opened their eyes to what it means to be a patient. For me, that doesn’t really resonate—I’ve had hemophilia my whole life. I had a lot of bleeding episodes as a newborn, and the doctors couldn’t figure out why. Child Protective Services came to my house and evaluated my mother to make sure that I wasn’t being abused. It took almost a month to realize that I had a bleeding disorder, and a month more to understand what it was. It wasn’t until I was at Children’s Hospital of Philadelphia that I was finally diagnosed with hemophilia. My parents were absolutely shocked—it came from a genetic mutation.

I grew up next door to Jehovah’s Witnesses who actually believed that people who get transfusions are going to hell. They ridiculed me on the bus, and they spat in our faces when we opened the front door. I was between three and nine years old when these people were really accosting my family, and it was one of the most directly confrontational experiences that I’ve ever had. To this day, I’ve never encountered so much bias and irrationally steadfast antagonism about a person doing what he needs to do to stay alive.

From the time I was about six until my young teens, I went to a camp outside Philadelphia called Hart Scout Camp. Hemophiliacs took over a portion of the camp for part of the summer to experience what it was like to be with other people like us. There’s nothing more welcoming than seeing other people who have the same chronic illness you do. Camp gave me the sense that I was normal.

But my camp years were at the height of the HIV epidemic, and every year, fewer and fewer of us came back. Back then, every time that you got clotting factor, you got exposed to thousands of people’s blood at one moment in time. Of kids born my year with severe hemophilia, 98 to 99 percent got HIV or AIDS. At camp, we would talk about our symptoms—swollen joints, frequent colds—almost humorously, because that’s what you do. But when we’d come back the next year, there were questions about who hadn’t showed up, what were the kids who did actually sick with, and how sick were they? Then the question became, who had died?

When I came back as a teen, we began to see that some of these symptoms were not symptoms of hemophilia, but of HIV and AIDS. When I was a mid-teen, the camp was stopped entirely because too few of us were coming back. We were talking about hundreds of kids initially. By the end, it was just a few kids. That was striking.

The infection rate was so high that they looked at the rest of us to see if we had genetic mutations for resistance. The Centers for Disease Control did a study of people my age with severe hemophilia, and it found that a bunch of us had mutations that provide natural resistance to HIV from an important receptor of the virus called CCR5. That’s why a subset was able to escape. I was part of the CDC study, but don’t have a mutation. I guess I just got lucky.

As I was growing up and deciding what to do when I was going to college, the impact of being a physician was very clear. The connection that I had to my hematologist was as close a connection as I had to my siblings and my parents. My doctors were integral to my day-to-day life, helping me to be optimistic through really challenging periods. I knew at a young age that there’s something really unique about bonding with patients. I wanted that same opportunity to make a big impact on people’s lives. I was also fascinated by how our bodies work: I wondered why I didn’t get HIV, and why, when I got hepatitis C, my body was able to fight it off. The intricacies between the immune system and the virus were intriguing, and they led to my interest in the immune system and cancer, which is what my career focuses on now. I saw two patients today, and I got a hug from each of them. How many jobs are there where the people you interact with, your customers, hug you because you play such a meaningful role in their lives and, hopefully, they play an equally meaningful role in yours? That’s what I love about being a physician.

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Getting Back to Life After an Assault
For a Workaholic, the Misery of Bed Rest
Sometimes, It’s Not the Doctor Who Heals
Working Through Lung Cancer

Originally published in the January issue of San Francisco

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