A Doctor’s Intimate View of Hemophilia
December 24th, 2013; Posted by: WeBleed staff
This is an excerpt from an interview by Claudia Dreifus of the New York Times or Dr. Holbrook Kohrt (a hemophiliac and a physician) that was too good not to share.
To view the entire article please click here – there is also a video available.
Dr. Holbrook Kohrt is a physician and researcher who has spent a lifetime as a patient. A 36-year-old hematologist at the Stanford University School of Medicine, he has an extreme form of hemophilia, the bleeding disease. We spoke about his life and work for two hours in person, and later by telephone. An edited and condensed version of the conversations follows.
Hemophilia is thought to be hereditary. Do other members of your family have it?
“No. None. When I was born in 1977, my parents didn’t even know I had it. After circumcision, I bled profusely. And then, during the first month of life, I kept bleeding. Though my father was a pediatrician and my mother a nurse, they didn’t even consider hemophilia.
They took me to the hospital, where the doctors thought my mother was abusing me — I had all these unexplained bruises. After some testing, it was determined that I had a very unusual type of hemophilia that comes from a random mutation.
Once that was known, my parents became centered on taking care of a child with severe hemophilia. So I grew up in a room that was padded so I wouldn’t bleed to death if I fell. I wore a helmet every day. There were frequent trips to the children’s hospital for emergencies, three hours from where we lived, in Lake Wallenpaupack, Pa.”
Was it possible to have a normal childhood under those circumstances?
“I wouldn’t say so. We lived in a small town. Many people there did not understand about hemophilia.
To stay alive, I had to have transfusions of a blood product — clotting factor — every other day. We had neighbors who were members of a religion that opposed transfusions. People from that family would ring our doorbell and scream that we were going to hell.
On the school bus, the others made fun of me. This got even worse during my adolescencebecause people first began reading about AIDS. To uninformed people, AIDS and hemophilia were the same thing…”
Again, to view the entire article and video please click here.
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Photo credit: Jim Wilson/The New York Time
