World Hemophilia Day is celebrated worldwide on April 17th of each year, a date proclaimed by the World Federation of Hemophilia (WFH) which chose the date in commemoration of the birth of its founder Frank Schnabel.
The objective of this
World Hemophilia Day is to raise awareness among the population about the
disease and to share knowledge and research to improve the quality of life of patients with this disease.
What is hemophilia?
Hemophilia is a congenital pathology that does not allow blood to clot correctly. It is a chronic and progressive condition characterized by permanent hemorrhages in the patient, which occur suddenly. This occurs due to the absence in the blood of an essential protein called Coagulation Factor.
When there is a defect in the coagulation factor, the clot that prevents bleeding forms more slowly. As a result, injuries or wounds bleed for longer than they should.
The recurring symptom is the presence of bleeding, but it ends up affecting other systems of the body that are vital for life.
How is the disease transmitted and what is the prognosis?
The disease is transmitted through a genetic load related to the X chromosome, which comes directly from the mother and which a male son ends up inheriting. In the case of girls, it is rare for it to occur.
Hemophilia is not contagious and affects
1 in every 10,000 births. It is a genetic disease linked to the X chromosome. Chromosomes are arranged in pairs. Women have 2
chromosomes X. While men have one X chromosome and one Y chromosome. When a man has his X chromosome affected, he will suffer from the disease, while if a woman only has one affected X chromosome, she will be a carrier of it, but does not develop the disease. When a woman has both altered X chromosomes, she will suffer from the disease, although this circumstance is very rare. This explains why most people with hemophilia are men.
The other way the disease manifests itself is when a genetic modification occurs spontaneously and where the genetic factor is not involved. This type is called acquired hemophilia.
The prognosis is closely related to the degree of complication of the disease, which can range from mild to very serious. So far, no definitive cure is known, only treatments are applied to achieve the most suitable blood clotting levels.
2024 Theme
Each year, a theme is chosen for the campaign of
World Hemophilia Day. In 2024, the theme is:
"Equal access for all: recognizing all bleeding disorders".
The goal is for all people with inherited bleeding disorders to have access to care, diagnosis, and treatment, regardless of their type of disorder, sex, age, place of residence, or any other condition.
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