Dr. Masood Fareed Malik, President-NMO, Pakistan Hemophilia Patients Welfare Society
An estimated 1 in 1000 people have a bleeding disorder; close to seven million men, women and children around the world, but 75 per cent of them don’t know it and receive little or no treatment. The Pakistan Hemophilia Patients Welfare Society has been working steadily to improve those numbers and its vision is to provide treatment for all people with inherited bleeding disorders, no matter where they live.
While there are different kinds of bleeding disorders, of varying severity, most people with bleeding disorders are at risk of bleeding longer than normal as their blood does not clot properly. They may also experience spontaneous, and potentially damaging, bleeding into joints, muscles or other parts of their bodies.
The most common bleeding disorder is von Willebrand disease (VWD). People with VWD have a problem with, or a deficiency of, a protein in their blood called von Willebrand factor (VWF) that helps control bleeding. Many people with VWD may not know they have it as their symptoms can be very mild.
Hemophilia is a rare bleeding disorder that affects approximately 1 in 10,000 people. Those with hemophilia do not have enough clotting factor VIII (Hemophilia A) or, less commonly, clotting factor IX (Hemophilia B), in their blood. A person born with hemophilia will usually have it for life and the severity depends on the amount of factor VIII or factor IX in the blood. Without treatment someone with severe hemophilia is not expected to survive to adulthood.
Rare clotting factor deficiencies are disorders in which one of several clotting factors is missing or not working properly. Less is known about these disorders because they are diagnosed so rarely and many have only been discovered in the last 40 years.
Finally, inherited platelet disorders are conditions in which the platelets in blood don’t work the way they should, resulting in a tendency to bleed or bruise. For information about Hemophilia in Pakistan, visit www.pakhpws.org/