Gordon Donlou, 49, was the first member of his family diagnosed with hemophilia. He experienced severe bleeding as a baby and was identified with hemophilia A at about 5 months old.
In elementary school, Donlou was surprised when he learned that people with hemophilia had a lifespan of no more than 15 or 20 years.
“It blew me away,” he says. “I was never told that until that moment. I never saw myself as a 20-year-old corpse. I saw myself as a college student.”
As a child, Donlou recalls many nighttime trips to Los Angeles Orthopaedic Hospital (now Orthopaedic Institute for Children) with his parents or sometimes his grandfather for plasma infusions and, when it became available later, concentrate.
“At about 6 or 7, I was put on a home program where my parents learned how to infuse me,” he says. “That was done for five or six years and then I learned to infuse myself.”
Like many hemophilia patients, Donlou has experienced problems with his joints, and, in 2000, underwent a knee replacement, and years later, surgery on both ankles at the same time, performed by Dr. James Luck and Dr. Mauricio Silva.
“That was possibly the hardest thing I’ve ever had to do in my life,” he says. “I couldn’t have done it without the support of the whole Hemophilia Treatment Center and the physical therapy team.”
Donlou continues to infuse himself prophylactically. He manages family properties and is an avid hockey fan, jumping up on his fused ankles to cheer on the Los Angeles Kings.