April 17th, 2020 is World Hemophilia Day. This event is held to help foster awareness about hemophilia and other related bleeding disorders. It is a day when this rare community comes together to celebrate the latest achievements in treatment and research. While it is important to keep the spirit of this event going, it needs to be done in a way that is sensitive to the current coronavirus/COVID-19 pandemic.
The event is held on April 17th because it was the day that Frank Schnabel, the founder of the World Federation of Hemophilia, was born.
About Hemophilia
Hemophilia is a genetic disorder which affects the ability of the blood to form clots, a process that is vital for stopping bleeding after a wound is sustained. The severity of symptoms can vary widely. The disorder is caused by a mutation found on the X chromosome. Symptoms include bleeding for a long time after an injury, risk of bleeding in the brain and joints, and easy bruising. Bleeding in the joints can cause permanent damage and brain bleeding can lead to headaches, decreased consciousness, and seizures. There are multiple types of hemophilia, with the most common types being type A and type B, which are distinguished by having deficiencies in different clotting factors. Treatment involves replacing the missing clotting factor. Drugs that thin the blood should be avoided. To learn more about this disorder, click here.
Get Involved
In order to maintain social distancing, minimize the spread of the virus, and keep members of the bleeding disorder community safe, activities for World Hemophilia Day will be held online. Here are some ways that you can get involved:
- Make a post about your experiences as a patient on your social media accounts.
- Share World Hemophilia Day materials with other members of the community.
- Write your own patient story on worldhemophiliaday.org.
- Wear red, the color associated with hemophilia and bleeding disorders outreach and advocacy.
To learn more and to access resources related to World Hemophilia Day, click here.
