May 19, 2024

World Hemophilia Day on April 17

Friday, April 17, the French Association of Hemophiliacs (AFH) celebrates the World Day of Hemophilia, with the aim of raising awareness as much as possible about the daily lives of patients and the integration of patients.

Why April 17? This date corresponds to the day of the birth of the Québécois Frank Schnabel in 1926, founder of the World Federation of Hemophilia.

Male illness

Hemophilia is a disease Hereditary hemorrhage due to the deficiency of a coagulation protein, usually present in plasma. This disease inherits from father to daughter and from mother to son. It mainly affects boys at birth. Girls are reached only in the rare cases where the father is haemophiliac and the mother carries the gene.

There is an average of 1 to 2 cases per 10,000 male births and there are approximately 5,000 haemophiliacs in France. A person with hemophilia does not bleed more than another, but since it does not coagulate enough, it runs the risk of bleeding if nothing speeds up the formation of a blood clot.

Hemophiliacs have a clotting factor deficiency. If it is factor VIII that is missing, we talk about hemophilia A, if it is factor IX, we talk about hemophilia B. Depending on the location of the bleeding (external, internal, intramuscular, intraarticular), l Stopping the blood flow or haemostasis should be reinforced by injecting a sufficient dose of the usual antihemophilic drug, as long as the healing is not secured in a sustainable manner.

An almost normal life

Taking into account the most severe forms of disease from Willebrand, very close to hemophilia, and the others diseases of coagulation, it is estimated in France that 15 000 people are affected by a faulty coagulation process.

Yet this disease is little known, hence the objective of the AFH to extend the practical information on the daily life of patients: the constraint of intravenous treatment, joint fragility that requires a lifestyle constantly under surveillance. ..

For more information: info@afh.asso.fr
Official website: www.afh.asso.fr



WTM 17/04/19 "World Hemophilia Day" (May 2024)