In the late 19th century a bleeding disorder caused the royal families of Great Britain, Russia, and Spain great distress. Several of the males in the family were dying at a young age due to hemorrhage, or excessive bleeding, after minor falls. At this time in history, before there was an understanding of the bleeding disorder or any sort of treatment, there was little the royals could do but carefully watch over their sons. The disorder first appeared in the children of Britain’s Queen Victoria and again in her grandchildren. It seemed the women of the British royal family spread it throughout the royal families of Europe. What became known as the “Royal disease” was in fact hemophilia.
March is Hemophilia Awareness Month. This month, organizations like The Hemophilia Federation of America (HFA) devote tremendous amount of effort into raising awareness for hemophilia and other bleeding disorders.
Hemophilia is an inherited condition in which the blood does not clot properly due to abnormal or insufficient blood clotting factor. Hemophilia is seen more often in males than in females as it is an X-linked disease. There are multiple types of hemophilia and cases can range from mild to severe. Internal bleeding in the joints is a major health concern associated with severe hemophilia. However, with proper care, children and adults with hemophilia can live healthy, active lives.
Many organizations compile lists of famous people who lived with Hemophilia and their accomplishments. We don’t have to go too far back in time to find individuals with hemophilia who are also spreading awareness about their condition. About 200,000 people in the US are living with hemophilia today.
The Blood Brotherhood program sponsored by the Hemophilia Federation of America offers men across the US a space to learn about their condition, share their experience, and connect with others. Online communities are often a great source of support for individuals living with genetic disorders. The Blood Brotherhood arranges webinars, online events, and an educational symposium every year to bring together members of the bleeding disorders community.
There are plenty of ways to get involved and help spread awareness for hemophilia before this month comes to a close! Visit the HFA website to learn how you can be an advocate for all people living with bleeding disorders.