To raise awareness and understanding about hemophilia and related bleeding disorders, the Department of Health (DOH) and various non-government organizations joined the Hemophilia Association of the Philippines for Love & Service (HAPLOS) in marking the World Hemophilia Day at Glorietta Mall in Makati City on April 11 to 12.
The two-day activity called “Count Me In” gathered different hemophilia groups and support groups to highlight the importance of being more active, leading the way to improved access to treatment. The event also called for public support for the hemophilia community, as well as seek government support for persons with hemophilia.
“We are honored to lead the country’s celebration of the World Hemophilia Day, celebrated every April 17, because it is an opportunity not only to generate understanding about hemophilia and other bleeding disorders, but also to inspire change. This event seeks to unite patients, health care professionals, advocacy groups, governments and industry partners to make the world better for the local bleeding disorder community,” said Ric Felipe, president of HAPLOS.
During the opening ceremony, DOH Undersecretary Dr. Vicente Belizario expressed the agency’s commitment in helping those with hemophilia and other bleeding disorders to address the challenges they are currently facing, especially in closing the gaps in care and treatment.
Philippine Children’s Medical Center (PCMC) Executive Director Dr. Julius Lecciones, on the other hand, discussed about the current status of Hemophilia treatment in the country. According to him, there are only about 1,200 People With Hemophilia (PWH) currently registered with the Philippine Hemophilia Foundation. He emphasized the need to educate more people with the help of PWH themselves, in order to provide adequate treatment for those living with such condition.
Representatives from the Kythe Foundation were also present to share their perspectives in winning against Hemophilia and managing the condition. Kythe Foundation, an organization aimed towards improving the quality of life among hospitalized children with cancer and other chronic illness, is a group of trained professionals providing the Child Life Program.
To understand more about Hemophilia, parents of children diagnosed with the condition provided testimonials, such as hemophilia’s impact on their day to day lives. According to the parents, they hope that by sharing their real-life stories and experiences, they will be able to help other families in the Philippines who are dealing with the same issues to live as normally as possible.
Providing entertainment during the opening ceremony was Darryl Shy, a finalist of “The Voice Philippines.”
The “Count Me In” event also featured psycho-social activities and structured play for children by Kythe Foundation. Kids were also delighted with other art activities such as face painting and caricature.
Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly.
The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning.
People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.
According to the World Hemophilia Federation, there are about 10,000 Filipinos with hemophilia and about 1-million Filipinos possibly with von Willebrand Disease and other bleeding disorders.
Despite being considered as a serious and lifelong condition, awareness for hemophilia has not gained momentum in most countries. As a result, significant disparities in treatment still exist, with about 75 percent receiving very inadequate treatment or no treatment at all.
The activity was co-organized by HAPLOS and the Philippine Children’s Medical Center (PCMC) and supported by the Novo Nordisk Hemophilia Foundation, Glorietta Mall and BusinessMirror Group of Publications.