Image: Agate Lielpētere, EHC website
Make the Invisible Visible
Another Von Willebrand Day is celebrated on February 1.
Von Willebrand is the most common congenital bleeding disorder and affects both women and men. Von Willebrand factor is a coagulation protein that helps platelets to stick to the blood vessel wall and to each other, which is necessary for the formation of a clot and to stop bleeding. VW factor VIII also protects the coagulation factor from rapid degradation. In von Willebrand disease, this gene is defective or completely absent.
Women with Von Willebrand disease usually have more symptoms than men due to their menstrual cycle and also after giving birth. According to the World Federation of Hemophilia, VWD affects up to 1% of the world's population. Common symptoms include heavy menstrual bleeding, nosebleeds, bleeding from the oral mucosa and bruising. Menstrual bleeding is sometimes so heavy that it affects a woman's quality of life. The most severe form of von Willebrand disease is rare. In moderate to severe von Willebrand disease, spontaneous bleeding in the joints and muscles, as well as bleeding in the stomach and intestines, can occur.
On February 1, the VWD Committee, together with ERN (EuroBloodNet), will start a major one-year VWD education project. Through this project, doctors, healthcare professionals and patients alike have a unique opportunity to discuss the most relevant areas related to VWD to give visibility to the challenges of people with this rare disease such as quality of life, access to treatment and care, medical services available in Europe, diagnosis and treatment options and the overall patient journey through life. Another goal of this program is to disseminate current knowledge to hematologists, gynecologists, internists, pediatricians, nurses, or other health care providers and patient organizations in the field of VWD.
The identity of the European VWD Association was also announced today: the logo and slogan. This is an important step forward for the whole European VWD community, which unites VWD patients regardless of their age, gender, nationality, religion or language. This is recognition and a symbol of our determination to fight for diagnosis, treatment and access to care for all VWD patients across Europe.
Read also Von Willebrand Awareness Day article EHC from the website.
Read more about von Willebrand from World Federation of Hemophilia and European Hemophilia Consortium website.