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Both a doctor and a patient: Stanford physician talks about his hemophilia

KohrtSome readers may have missed this because of the holiday, but the New York Times last week featured Stanford's Holbrook Kohrt, MD, PhD, in its "A Conversation With" series. In the Q&A, Kohrt, a hematologist/oncologist who himself has a severe bleeding disease, talks about his research, how his illness shapes his work, and how his childhood experiences led him to become a physician. (As a child, "it was doctors who I related to more than my peers," he notes.) I found his description of growing up as a hemophiliac particularly gripping - and heartbreaking:

On the school bus, the others made fun of me. This got even worse during my adolescence because people first began reading about AIDS. To uninformed people, AIDS and hemophilia were the same thing.

To make the situation even worse, large numbers of hemophiliacs developed H.I.V. At the beginning of the H.I.V. epidemic, the blood banks didn’t test their donors for the virus. To stay alive, hemophiliacs often require transfusions of the clotting factor. It’s a protein that our bodies can’t make naturally, and it’s made up from the blood of hundreds, perhaps thousands of donors. Well, if one of those donors had H.I.V., it could be transmitted to anyone who received the blood product. In those years, of the severe hemophiliacs, 95 percent died after contracting H.I.V. from transfusions.

I remember, from the time I was 8 years old, I went to this special summer camp for hemophiliac children. The first year I attended, there were about 200 campers. Eight years later, they stopped having the camp altogether because there were just two of us left.

For more reading, Kohrt, whose work focuses on new ways to fight cancer, was profiled in a Stanford Medicine magazine article earlier this year.

Previously: New issue of Stanford Medicine magazine asks, What do we know about blood?
Photo of Kohrt by Erin Kunkel

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