On April 17, 1926, Frank Schnabel was born, a Quebecer who co-founded, with the Frenchman Henri Chaigneau, the World Federation of Hemophilia. This date of April 17 was then logically chosen to celebrate World Hemophilia Day each year. For this World Day 2023, the theme chosen in France is “WHD 2023, let’s mobilize for rare constitutional bleeding diseases!” “.
World Hemophilia Day, WHD 2023
The objective of World Hemophilia Day is to make as many people as possible aware of haemorrhagic diseases that are little known to the general public, including hemophilias. For WHD 2023, a common thread operation is organized by the French Association of Hemophiliacs in which everyone can participate. To do this, simply order one or more kits of red bracelets (each kit contains 20 bracelets), then distribute these bracelets, explaining the symbol it represents.
The bracelets can be distributed on all occasions, family reunions, professional meetings, associative life, meals with friends, …. Once the bracelets have been distributed, photos must be taken and shared on social networks before April 17, 2023 with the #filrougeAFH and the #JMH2023. At the same time, an awareness-raising video spot will be made available on the association’s Facebook page from the evening of April 16. Everyone is invited to share it widely on social networks.
JMH 2023, hemophilia A and hemophilia B
At the global level, the theme of WHD 2023 is “Access for all: the prevention of bleeding as a global standard of care”. The objective is to enable better recognition of patients with hemophilia, the establishment of dedicated care pathways and greater inclusion in society. Hemophilia, or rather the hemophilias, are inherited bleeding disorders. There are two types :
- Hemophilia A corresponds to a factor VIII deficiency (one of the blood clotting factors) (80% of cases);
- Hemophilia B corresponds to a factor IX deficiency (another clotting factor) (20% of cases).
Hemophilia affects mostly men, women being exceptionally concerned (the mode of transmission of genetic anomalies being sex-linked). The main symptom is bleeding, which occurs unexpectedly or following very mild trauma. Symptoms and consequences are very similar between the two types of haemophilia. The diagnosis is made following blood tests, which reveal the deficiency in coagulation factors.
World Hemophilia Day, for better patient inclusion
Depending on the severity of bleeding and their consequences, several stages of hemophilia are defined and depend on the genetic abnormalities in question:
- Mild hemophilia with blood coagulation between 5 and 25% of normal;
- Moderate hemophilia with blood coagulation between 1 and 5% of normal;
- Severe hemophilia with blood clotting less than 1% of normal.
While mild hemophilia may go unrecognized and never diagnosed, bleeding serious can occur in severe hemophilia. Regular transfusions are necessary to compensate for the deficient coagulation factor. Likewise, transfusions may be necessary in case of heavy bleeding. Precautions are essential in daily life to prevent any trauma, even slight, which impacts the quality of life of patients.
Estelle B., Doctor of Pharmacy
Sources
– Hemophilia. msdmanuals.com. Accessed April 6, 2023.