Millions of people worldwide are affected by bleeding disorders such as hemophilia, von Willebrand disease (vWD), Glanzmann thrombasthenia, and more. In 1986, President Ronald Reagan sought to raise awareness around bleeding disorders – and more specifically, hemophilia – by designating March as Hemophilia Awareness Month. Since then, our understanding of the scope of bleeding disorders has expanded. Thus, in 2016, the U.S. Department of Health and Human Services changed Hemophilia Awareness Month to become Bleeding Disorders Awareness Month. 

For 2022, the National Hemophilia Foundation (NHF) has declared the theme of Bleeding Disorders Awareness Month to be “Start the Conversation.” During the month of March, the NHF hopes that people will begin having more conversations – whether about hemophilia as a whole, treatment options, the diagnostic journey, or any other important insights.

Learn how you can get involved for Bleeding Disorders Awareness Month!

Hemophilia and vWD

For this article, we’re going to provide an overview of hemophilia and von Willebrand disease. 

Hemophilia is a rare disorder in which the blood doesn’t clot normally due to a lack of clotting factors. Normally, clotting factors help blood cells form a clot to stop bleeding or close wounds. However, due to a lack of clotting factor VIII (for hemophilia A) and factor IX (for hemophilia B), patients do not clot normally, resulting in excessive bleeding. Hemophilia affects males more than females, with females most often being carriers. Symptoms include irritability (in infants), large and deep bruises, joint pain and swelling, bloody urine or stool, random nosebleeds, and excessive and prolonged bleeding following injuries, cuts, surgeries, or dental work. If you have hemophilia and experience intense headaches, sudden pain and swelling in large joints, nausea and vomiting, fatigue, neck pain, and double vision, please seek medical attention as soon as possible.

von Willebrand disease (vWD) affects the blood’s ability to clot. There are over 300 genetic mutations associated with vWD. There are three forms of vWD. Type 1 is the mildest form and is characterized by low levels of von Willebrand factor (VWF), a protein that plays a role in clotting and carrying factor VIII through the bloodstream. Type 2 has normal VWF levels but the protein does not work well. Finally, type 3 is the most severe form, with little to no VWF in the blood. vWD is considered to be the most common genetic bleeding disorder, with an estimated 9 out of 10 people not yet diagnosed. Symptoms include easy bruising, frequent and heavy nosebleeds, bleeding from the gums, abnormal menstrual bleeding, bloody stool or urine, abnormal bleeding following a cut or injury, limited joint mobility, and pain. 

Bleeding Disorders Awareness Month

Are you ready to help Start the Conversation for Bleeding Disorders Awareness Month? Interested in raising bleeding disorders awareness, sharing your story, or providing support to those with bleeding disorders? Here are a few ideas on ways to get involved:

• Donate to the NHF. Your donation can help spur research into hemophilia and other bleeding disorders, as well as help the organization to provide education and resources.
• Share your story. One of the best ways to start the conversation is to share your own insights. You can submit your story on Patient Worthy! Alternately, you can share your story via video for the NHF! 
• Get social. That’s right, start raising your voice on social media. Use the hashtags #BDAM and #BleedingDisordersAwarenessMonth to share what is meaningful to you and to connect with others within this community. 
• Support Run Red. Run or walk during the month of March to help fundraise for bleeding disorder research! 

To find out other ways to get involved, take a look at this helpful sheet from the NHF!