Philippines Celebrates World Hemophilia Day via "Count Me In" event in Glorietta
World Hemophilia Day in the Philippines
In celebration of the World Hemophilia Day
on April 17, the Hemophilia Association of the Philippines for Love &
Service (HAPLOS) will spearhead a national gathering of different Hemophilia
groups and support organizations at the Glorietta Mall in Makati City on April
11 to 12.
Dubbed “Count Me In,” the two-day activity
seeks to raise awareness and understanding about hemophilia and related
bleeding disorders. The event expects to gather around 300 persons with these
conditions, along with their families and friends.
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. 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, about 10,000 Filipinos have hemophilia. On the other hand, there
are about 1-million Filipinos possibly affected with von Willebrand Disease and
other bleeding disorders. However, only around 1,200 have been identified.
Despite being considered as a serious and
lifelong condition, awareness for hemophilia, von Willebrand Disease and
inherited bleeding disorders has not gained momentum in most countries
including the Philippines. As a result, significant disparities in treatment
still exist, with about 75 percent receiving very inadequate treatment or no
treatment at all.
Through the event in Glorietta Mall, HAPLOS
hopes to educate more people with the help of PWH themselves, and create a call
to action in order to close the gap in care and treatment.
“Unlike other conditions, Hemophilia, von
Willebrand Disease and other bleeding disorders receive little public awareness
and attention. The World Hemophilia Day, celebrated by countries all over the
globe, is an opportunity for the bleeding disorder community to come together,
speak out, and focus on the need to improve and maintain treatment, as well as
help those with the condition to live as normally as possible,” said HAPLOS
President Ric Felipe.
“Count Me In” lead campaigner Andrea
Echavez said the event serves as a call to action to those with hemophilia, von
Willebrand Disease and other bleeding disorders to be more active and be
included in the National Hemophilia Registry.
“We want to encourage people with
Hemophilia, von Willebrand Disease and other bleeding disorders that even
though our condition is life-long, we can be productive members of the
society,” Echavez, who has von Willebrand Disease, said.
A former Inquirer reporter and now a
communication consultation of an international organization, she said many
patients feel overwhelmed with their condition especially when they experience
bleeds.
“Our quality of life is definitely
different from those without disorders. And we are not dismissing what our
fellow patients feel. Many times bleeds can be overwhelming. But it should not
stop us from striving to lead normal lives,” Echavez said.
Count Me In campaign also calls for volunteers
from outside the Hemophilia community, public support for the Hemophilia
community, and for government to look into the plight of persons with
hemophilia.
The two-day event will feature
psycho-social activities for children and youth by Kythe Foundation,
fundraising activities such as sale of art work and products by persons with
Hemophilia and their families, testimonials of persons with Hemophilia, medical
lectures on hemophilia and other bleeding disorders, video loops in between
programs, as well as entertainment by children and adults with hemophilia and
other bleeding disorders.
There will also be a blood donation
campaign with the assistance of the Philippine Red Cross.
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