Does Von Willebrand disease (VWD) only affect women? Is heavy menstrual bleeding normal? Is hemophilia more prevalent than VWD?
VWD is the most common bleeding disorder—but it’s not as well-known as other bleeding disorders and perhaps because of this, it is severely underdiagnosed. Patients often feel frustrated that their disease is not being properly recognized and many feel isolated because of this. Simply put: there is a lack of education on what VWD is and how patients are impacted.
During the 2018 Global NMO training, held before the World Federation of Hemophilia (WFH) World Congress in Glasgow, Scotland, many participants were interested to learn more about Von Willebrand Disease. One attendee remarked, “I didn’t know that VWD affects both men and women equally and I didn’t know very much about the disease. I thought it was like hemophilia.” One patient with VWD said, “Von Willebrand Disease is a total separate disease from hemophilia.” There is much to do to increase awareness of VWD and to improve management of the disease.
The WFH is leading global efforts to raise more awareness of VWD and increase diagnosis through the VWD Initiative Program and the VWD Global group. This year, the WFH developed a global Call to Action, and asked all national member organizations (NMOs) to sign on as a part of their commitment to integrate VWD into their work and to raise awareness of the disease.
Each NMO of the WFH is invited to sign onto this Call to Action to acknowledge the work that needs to be done, to make a commitment to recognizing VWD and other rare bleeding disorders by taking action to create awareness, and to offer resources and provide support to improve the lives of those living with VWD. So far, ten NMOs have signed on to the initiative.
NMOs can implement a number of measures in order to better integrate VWD into their work and to raise awareness for the condition. For example, they can organize a talk with patients and families on what VWD is; write articles in a newsletter, blog or on social media; or liaise with a hemophilia treatment center to educate and support parents. NMOs can also add VWD in their advocacy efforts, perhaps by creating a VWD-focused committee in their organizations. This would be particularly valuable way to destigmatize VWD in countries where blood is a taboo subject.
All bleeding disorders matter. By working together to improve the quality of life of all people with bleeding disorders—including VWD—our community becomes stronger and more united.