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The Medical Symposium on Hemophilia and Bleeding Disorders kicked off October 3, 2008 at the Pacific Islands Club.
The main focus of the symposium, sponsored by the Department of Public Health and Social Services Guam Comprehensive Hemophilia Care Program, was to explain the advances and successes of the community that have taken place over the last 10 years.
"We have developed a clinical team of specialists in diagnosing and treating rare, inherited, chronic bleeding disorders -- namely hemophilia and Von Willebrand Disease," said Judith R. Baker, the administrative director of Mattel Children's Hospital at the University of California, Los Angeles.
"It's absolutely critical that when somebody has a rare bleeding disorder like hemophilia, that there be a team of clinicians who have a depth of knowledge and expertise in diagnoses and management and that's what we've developed on Guam," she said.
Hemophilia is an inherited lifelong bleeding disorder characterized by episodic bleeding episodes, said Bob Miller, assistant professor of pediatrics at the University of Southern California School of Medicine. The disease can sometimes be life-threatening and can often be crippling, he said.
Insurance
While the main focus of the symposium was to explain the successes of the community, 25-year-old hemophiliac Mark Cosico hopes that the insurance companies will take notice of the symposium as well.
Cosico said that his insurance doesn't cover the cost of Factor VIII, the medication used to treat the disease, and he makes too much money to qualify for the Medically Indigent Program.
It's too expensive for him to purchase, Cosico said.
"Where I get my supply is by donation," he said.
Without the medicine, the only thing Cosico can do is ice down and elevate joints affected by the hemophilia.
"What I really want -- not only for myself but other hemophiliacs -- is to let the insurance companies on Guam know that they need to cover that Factor (VIII). In the states they cover it," Cosico said.
Cosico was diagnosed with hemophilia when he was about 8 years old. Pain in his joints caused by the disease forces him to walk with a limp.
Cosico said his daughter also suffers from hemophilia and he's had to teach her to take care of herself. He said it can be difficult because kids like to run around. There have been a couple of times when his daughter has been hurt and had to stay home from school, he said.
"It's difficult when she asks why she has hemophilia and has to stay home from school, he said. "It's hard to explain."
Von Willebrand
Von Willebrand disease is another bleeding disorder even more common than hemophilia. Miller said the disease affects one in 100 people. It's sometimes less severe than hemophilia, but still results in episodic bleeding that can be life-threatening, Miller said.
Baker said there were about 50 people on Guam with hemophilia and von Willebrand disease, which is higher than the average.
"Statistically, with approximately 170,000 people on Guam, you would expect 17 people with hemophilia," Baker said.
Baker said she was pleased with the outcome of the symposium and that she had started some very good dialogue between the clinical team, nurses and the community.
"We're very proud of the bleeding disorder community that has come together and had such success in taking care of the population here on Guam," Miller said.
The two-part symposium will conclude today with a "family gathering" at Pacific Islands Club to celebrate the 10th anniversary of the foundation. It's for those with hemophilia and other bleeding conditions, their families, friends and other participants, or those interested in the foundation.
