BY: BY JENNIFER C. TILOS
DUMAGUETE CITY, April 22 (PIA) --“Speak Out, Create Change,” the theme to encourage the over 60 haemophiliacs in southern part of Negros Oriental during the observance of World Haemophilia Day, Thursday at Robinsons Place Dumaguete.
The Little Children of the Philippines Foundation (LCP) has launched its haemophilia awareness campaign to about 100 participants-children who have haemophilia disease with their parents, healthcare practitioners and partner organizations.
This year’s celebration of World Haemophilia Day is centered on reaching out to the youths to promote participation and strong leadership among them.
“We want our young members to feel inspired to assume key roles in building and supporting the bleeding disorder community,” said Peter Cipres Janguin, a registered nurse of LCP.
“It is important that we continue to work together and raise awareness of the issues faced in the bleeding disorder community. We can do more together than we can as individuals,” Janguin continued.
In the Philippines, there is an estimated 8,000 to 10,000 haemophiliacs and 10 times this number of women who suffer from Von Willebrand disease, another bleeding disorder.
There are only a little over 1,000 haemophiliacs and around 26 people with Von Willebrand disorder diagnosed.
“No one should ever face living with a rare bleeding disorder alone,” said Alain Weill, President of World Federation of Haemophilia.
Weill wanted to encourage people to be a part of the worldwide effort to speak out and create change to improve the diagnosis and standards of treatment for those who need it.
As part of its campaign, Dr. Sheila Marie Loo Flores of the Pediatrics Department of the Silliman University Medical School has lectured on the available treatments and injury prevention for patients with bleeding disorders.
The doctor encouraged families who are struggling to provide medication for haemophiliac children or other members of their family to visit the LCP clinic for assistance.
Parents also engaged in an open forum with the specialist to better understand the needs of their haemophilic children.
Ernette Joy Taleon, a registered physical therapist, also interacted with haemophiliacs during the event to teach them proper exercises for a healthier life.
“Having haemophilia doesn’t mean you can’t exercise, everyday activities are important, too,” said Taleon.
Haemophilia, von Willebrand disease, inherited platelet disorder and factor deficiencies are genetic disorders thatstops the body from regulating blood clotting, thereby leading to excessive bleeding in individuals who have them.
These disorders are passed down from parent to child. People who have haemophilia, often called “haemophiliacs”, have a deficiency in certain clotting factors or proteins in their blood.
Haemophiliacs can suffer from uncontrolled bleeding even from minor injuries and bleeding in joints, muscles and organs which could cause death.
These genetic disorders are more likely to occur in males than females. However, women who have the defective genes will most likely become carriers of the disorder and can give birth to haemophilic males and females who are haemophilia gene carriers. (mbcn/JCT/PIA7-NegOr with reports from Mitchiko Bitoon, Intern)