Patients with von Willebrand disease (VWD) have deficient or defective von Willebrand factor (VWF), a protein in the blood that is important for clot formation. When a blood vessel is injured and bleeding occurs in people with VWD, it takes longer for their blood to clot and for the bleeding to stop. VWF helps blood clot in 2 ways1:
VWD is the most common bleeding disorder, occurring in approximately 1% of the world’s population, including as many as 3 million people in the US alone.2 It’s primarily a hereditary disease and occurs in women and men in equal numbers.2 It is suspected that there are many undiagnosed people living with VWD.3
VWD is usually passed down (inherited) from a parent to a child. In rare instances, a child can have VWD even without a family history of the disease. This can happen as a result of a spontaneous mutation (change) in the gene. The child can later pass the disease on to his or her children.2
“There are a lot of things people don’t understand about von Willebrand.” — Kelly, parent
It is rare but possible for someone to develop VWD later in life. If VWD is acquired (not inherited from a parent or a result of a gene mutation), it cannot be passed along to any children. VWD can be acquired when a person’s own immune system destroys his or her VWF, often as a result of another disease or medication usage.2
VWD occurs in men and women equally.1
The diagram above shows how the mutated gene could be inherited. This diagram shows the inheritance pattern of a father who has mild VWD and a mother who does not have VWD. Each pregnancy has a 50% chance in resulting in a mild or carrier of VWD. If both parents are affected, there is a 25% chance of a pregnancy resulting in a severe type of VWD.4
Diagnosing VWD usually involves reviewing personal history of bleeding or bruising that is more than normal, such as5:
Heavy menstrual bleeding may lead to anemia.4 Signs of anemia to watch for include weakness, tiredness, and paleness. If a woman notices any of these symptoms, she should contact her healthcare provider.6
Your healthcare provider will likely also research whether you have a family history of bleeding, give you a physical exam, and check for signs of liver disease or anemia (low red blood cell count).4,5
People with severe VWD often have symptoms as babies and may be diagnosed early, but in milder cases VWD often isn’t diagnosed until adulthood. An accurate diagnosis is extremely important for women in order to avoid unnecessary and/or invasive treatments, such as hysterectomy.1
Testing may be repeated multiple times because a person’s VWF levels can vary in different instances and may appear normal. Because routine blood tests often give normal results, VWD can only be diagnosed with several specialized blood tests.1
Women have a few more considerations than men when managing von Willebrand disease (VWD).
How von Willebrand disease (VWD) is treated depends on the type and severity.
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