Haemophiliacs seek recognition

Photo by: TRACEY SHELTON
Children with haemophilia during the commemoration of International Haemophilia Day at the National Paediatric Hospital.

The Phnom Penh Post
http://www.phnompenhpost.com/

Written by Tracey Shelton
Tuesday, 02 June 2009

Doctors and sufferers of the blood disorder haemophilia used World Haemophilia Day to call for greater recognition of the condition, which often goes undiagnosed in Cambodia

MEDICAL professionals, haemophilia patients and families gathered at the National Paediatric Hospital (NPH) Monday in a joint celebration of both International Child Day and World Haemophilia Day.

This was the first meeting organised by the recently formed Cambodian Haemophilia Association (CHA), created to give support to those suffering from the blood disorder that limits a patient's ability to produce the essential blood-clotting protein known as factor 8.

"Our mission is for families to band together to convince the government and Ministry of Health to establish a national guideline for the treatment of haemophilia and provide the medicine patients require," said Dr Chean Sophal, pediatrician for NPH and medical adviser for CHA.

Without regular injections of the protein factor 8, Sophal said, patients become handicapped due to recurrent bleeding in the joints that damages the muscles. Without proper knowledge and health management, many patients die from blood loss, as without this protein their bodies are unable to stop bleeding.

Haemophilia affects one in every 5,000 men worldwide, according to medical laboratory scientist Robyn Devenish, who diagnosed the first case of haemophilia in Cambodia in 2001.

"Everyone said setting up a testing system here was a waste of time," she said. "But within three months, the first cases were turning up. The problem was no one knew what to do, so we had to teach the doctors how to treat it."

Dependent on donations
There are currently 45 registered haemophilia patients in Cambodia being treated at either NPH or Angkor Hospital for Children in Siem Reap. In the developed world, treatment is provided free and is readily available, Devenish said, but in Cambodia factor 8 is donated from abroad in limited amounts.

Twelve-year-old Say Usaphea has lived with swollen limbs, bleeding gums and other complications since he was 7 months old.

Diagnosed only three years ago, Say Usaphea has received enough treatment to improve his condition, but his left knee is still about twice the size of the right.

But despite ongoing complications, Say Usaphea proudly boasted that even with the limited donations of factor 8 he has received, "I can now ride my bike to school".

Newly elected CHA Chairman Noun Vorleak, whose 2-year-old son also suffers from the blood disorder, said: "We hope to hold future events like this to push us to stand together in raising awareness and finding sponsorship both locally and internationally."