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The Art of Living With Hemophilia
A Story of Personal Triumph Through Art By Kelly Burgess
Paul Gilmer doesn't allow his limitations to define him. Rather, he uses his creative energy to define a life of unlimited potential.
Shortly after his birth in 1984, Paul was diagnosed with severe hemophilia B, a hereditary bleeding disorder. He has endured pain, long hospitalizations and has had to refrain from many of the rowdier activities a boy without his condition would normally participate in. But through art, Paul learned to focus on the positive: what he could do rather than what he couldn't.
Hemophilia affects males almost exclusively, but the gene for hemophilia is passed through the mother, even though she probably didn't suffer from the disease. With hemophilia, the clotting factors VIII and IX are deficient or missing. Since hemophilic blood clots very slowly, bleeding is often prolonged and may become life threatening if it isn't stopped. Treatment usually requires hospitalization and intravenously administered clotting factors. There are also medications to reduce the frequency and severity of bleeding episodes.
Like most other disorders, hemophilia has varying degrees of severity. A person with a greater deficiency of clotting factors is usually diagnosed at birth or shortly thereafter. A person with a less severe case may not be diagnosed until their first injury or something as simple as losing a tooth.
In addition to the obvious danger of bleeding to death, joint bleeds cause intense pain and can damage the joint over a period of time. In Gilmer's case, he had such a rare type of hemophilia that there were no medications to help control his episodes, so he had to rely on pain medication, ice and immobilization. Even then, he would be in severe pain for weeks at a time, had a significant loss of motion in his arms and suffered from arthritis, a common problem for people with hemophilia. Then, in 1999, the FDA approved a new medication called NovoSeven®, manufactured by Novo Nordisk Pharmaceuticals, Inc.
"I have a very rare form of hemophilia and am allergic to normal treatments," says Gilmer. "This is the only treatment out there so far for my condition, and it was just amazing."
It was also the start of an amazing partnership.