DOH, NGOs join Philippine hemophilia community for World Hemophilia Day
Mr. Jeppe B. Thiesen, Gen. Manager, Novo Nordisk Pharmaceutical Philippines
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.
One of the parents of children diagnosed with Hemophilia giving his heartfelt testimony
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.
HAPLOS booth during the said event in Glorietta Activity Center
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