Every April 17 World Haemophilia Day is recognised worldwide to increase awareness of haemophilia and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.
World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday.
- Hemophilia is one of a group of inherited bleeding disorders that cause abnormal or exaggerated bleeding and poor blood clotting.
- Hemophilia A and B are inherited in an X-linked recessive genetic pattern, so males are commonly affected while females are usually carriers of the disease.
- Hemophilia A is caused by a deficiency of clotting Factor VIII, while hemophilia B (also called Christmas disease) results from a deficiency of Factor IX.
- Hemophilia varies in its severity among affected individuals.
Symptoms include excessive bleeding from any site in the body; long-term damage to joints from repeated bleeding episodes is characteristic.
- Treatment involves coagulation factor replacement therapy.
- The formation of inhibitors to the treatment factor concentrates is a significant complication of treatment.
- Gene therapy treatments are a source of active research and hold promise for the future.