Professionals aim to raise awareness about disorder


April 18, 2010

ISLAMABAD: World Haemophilia Day was observed in Pakistan on Saturday to increase awareness about bleeding disorders.

Haemophilia and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders either do not have enough of a particular clotting factor, a protein in the blood that controls bleeding or it does not work properly.

Various activities were arranged by private and public organisations to mark the day. This year’s theme is ‘The Many Faces of Bleeding Disorders: United through the World Federation of Haemophilia (WFH) to achieve Treatment for All’.

World Haemophilia Day was first observed in 1989 and the World Federation of Haemophilia chose April 17 in honour of WFH founder Frank Schnabel, who was born on that day.

The ‘Many Faces of Bleeding Disorders’ campaign is part of the WFH’s continuing efforts to improve care for people with inherited bleeding disorders around the world. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning.

People with haemophilia can experience uncontrolled internal 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. Dr Tahira Zafar, Chairperson, Medical Advisory Board, Pakistan Haemophilia Patients Welfare Society (PHPWS), said the society is committed to raising awareness amongst patients, their families, medical staff and the general public about haemophilia.

The society is providing free professional advice as well as preventive, educational and medical assistance to haemophilia patients and their families, she added.

According to medical experts, about one in 10,000 people are born with this disease. Haemophilia is usually inherited as it is passed on through a parent’s genes, though sometimes haemophilia can occur when there is no family history of the disorder.

About 30 percent of people with haemophilia did not inherit the disorder from their parents. In such cases, the disease is caused by mutations of one’s own genes.

When the father has haemophilia but the mother does not, none of the sons will have haemophilia while all of the daughters will carry the haemophilia gene, experts explaivned. Women, who have the haemophilia gene are called ‘carriers’. They sometimes show signs of haemophilia and can pass it on to their children.

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