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What is von Willebrand Disease?

Von Willebrand Disease (VWD) is a bleeding disorder. It is believed that VWD is the most common bleeding disorder with an estimated 1 in 100 people affected. Like hemophilia, VWD is passed down from parent to child. But unlike hemophilia, males and females have an equal chance of having VWD.

Von Willebrand Disease VWD is caused by a problem with a specific protein, von Willebrand factor (VWF). People with VWD either do not have enough VWF or what they have does not work right. VWF plays two important roles in blood clotting. VWF is the protein that makes platelets stick to the wall of an injured blood vessel and to each other, forming a platelet plug. VWF is also a carrier protein for factor VIII. This means that it helps make sure that there is enough factor VIII in the blood, and it helps get the factor VIII to where it is needed. Without VWF, factor VIII will be broken down in the bloodstream and there may not be enough to stop bleeding.   

Most people with VWD have a decrease in the amount of the VWF in their bodies, which means there is enough for small injuries. But when a larger platelet plug or more factor VIII is needed, for a severe injury, bleeds take longer to stop and can cause permanent damage or become life-threatening.

 

Learn more about von Willebrand Disease and other bleeding disorders in The VWD & Platelet Disorder Handbook, a free online resource for everyone in the bleeding disorder community

Common symptoms of VWD include: 

  • Nosebleeds
  • Easy bruising
  • Heavy menstrual bleeding (periods) – excessively heavy flow that lasts longer than seven days 
  • Abnormal bleeding after surgery, having a tooth pulled, injury, or childbirth 

Less common symptoms of VWD include: 

  • Bleeding into the stomach and intestines
  • Bleeding into the joints 

There are several tests to check for von Willebrand Disease and often tests need to be repeated for confirmation. Because VWD is usually passed down through families, it is important that all family members be tested. Currently, there is no cure for VWD, but there are medications people can take to control bleeding. Staff at hemophilia treatment centers (HTCs) can perform tests to check for von Willebrand Disease and provide treatment and care.