Persons with hemophilia, a rare blood disease, launched an awareness campaign on their condition and called on the government to extend assistance to them.
Most patients with hemophilia are unable to finish school because the medicine is very expensive, said 23-year-old Edward Co.
He said only a few among the 80 diagnosed patients with hemophilia in Cebu managed to graduate college.
Co worked fulltime with the Haemophilia Association of the Philippines, Inc. (Hapi C) after graduating college.
The organization assists hemophiliacs in the country which now number 1,159, with 109 cases in Central Visayas.
With most hemophiliacs unable to finish school due to health-related absences, they are also asking the Department of Education (DepEd) and Commission on Higher Education (Ched) to give special privilege to students afflicted with the disease.
“At first, I pitied myself but was able to accept my fate through time,” said Jurich Sungcad, 23.
He also asked the Commission on Higher Education to consider their cases especially when it comes to class attendance since being absent cannot be avoided.
Janssen Alolor, 22, laments that “even if we can do certain things any normal person can do, we are not allowed because of this disease”, Janssen said.
Co said he finished college despite his difficulties. He spent his elementary and high school on a wheelchair and used a cane when he was in college.
“We were isolated especially when it comes to physical activities. We cannot live as normal as we want. Our parents would not allow us to play outside the house which is normal to children, since they’re afraid that we might be injured,” Co said.
According to Dr. Lynda Mae Lepatan, a specially trained hematologist of Perpetual Succour Hospital, hemophilia is a life-long bleeding disorder of the blood clotting mechanism.
Hemophiliacs“don’t bleed any faster than normal, but they can bleed for a longer time,”said Dr. Lepatan.
The disease is usually genetic. Men are the ones affected by the disease.Women with the hemophilia gene usually don’t ’have signs of the disease but they carry and pass it on to their children. They are called hemophilia carriers.
Treatment for the disease is expensive, Lepatan added.
A dose of the medicine used to treat hemophilia called factor concentrate costs around P5,000 per vial. Hapi C does have these medicines which are donated by the World Federation of Hemophilia.
The association, along with the Perpetual Succour Hospital where the hemophilia center is located, hopes to have more donations for the treatment and a comprehensive hemophilia care center in the region. /Joy Cherry Quito, Correspondent