What will happen to my body?
While von Willebrand disease (VWD) is treatable, the unpredictability of a bleed occurring can affect a person’s life physically in a number of ways1,4,15:
As with most disorders, the psychological effect of living with a chronic disease is often overlooked, but can have just as much impact as physical symptoms. You may experience feelings of1,4:
Living Well with VWD
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Living well is an important step in taking control of both physical and mental well-being for people living with VWD. Following these helpful tips and becoming part of a larger VWD community can help empower you to become an advocate for your own care.
Knowledge can be your most powerful tool
Over time, people with VWD and family members may find that they become experts on their own situations and then begin to educate others. People with VWD can work with their healthcare team to make decisions together, which can give them a greater sense of independence and choice in managing VWD and taking steps toward living well. Each person’s experience of VWD is different, so, in some ways, the person with VWD can be their own best guide. Informed, proactive people with VWD can become strong advocates for their own healthcare and for family members or others faced with VWD. They can also raise awareness and educate physicians, carriers, and the general public about VWD.4
Finding common ground is at the root of the VWD community
Many people living with a chronic condition, their families and friends may find it helpful to connect with others living with the same issues. Feeling like a part of a community can increase knowledge of VWD or other bleeding disorders and potentially reduce anxiety or feelings of isolation.4
Often hemophilia organizations provide resources about bleeding disorders other than hemophilia, including VWD. The National Organization for Rare Disorders provides online resources for people with bleeding disorders and their families and also supports clinical research and advocacy efforts.
Blood Brotherhood and Blood Sisterhood are initiatives sponsored by the Hemophilia Federation of America and support blood disorder patients by providing them the tools they need to be strong advocates for their disorder within healthcare circles and the broader community. Be sure to bookmark the Shire Bleeding Disorders Communities on Facebook, Instagram and YouTube.
And of course this site, Beyond the Bleed, should prove to be an invaluable resource for the VWD community. Hopefully its useful links and information will be your go-to resource for everything VWD.