von Willebrand disease (vW) is a bleeding disorder which affects the blood’s ability to clot. People with vW have low levels of a protein involved in blood clotting, von Willebrand factor (vWf) in their blood, or their vWf doesn’t work very well, so it takes longer for bleeding to stop. vW affects both men and women equally, though women may experience more problems linked to periods, pregnancy and childbirth.
If your blood doesn’t clot properly, you can have bleeding symptoms such as easy bruising, nosebleeds, and heavy periods. It may also be hard to stop bleeding after injury or surgery.
vW is the most common type of bleeding disorder: it’s estimated that around 1% of the world population may be affected.
vW is usually inherited: passed from parents to their children through their genes, especially in severe cases. You can’t ‘catch’ it from someone else, but, very rarely, it’s possible to acquire the disorder as a result of another medical condition.
Many people with vW may not know that they have the disorder because their bleeding symptoms are very mild – research suggests that as many as 9 out of 10 have not been diagnosed.
For most people with vW, the disorder causes little or no disruption to their lives except when there is a serious injury or need for surgery. However, with all forms of vW, there can be bleeding problems, and in occasional severe cases, internal bleeding to muscles and joints can occur in a similar way to haemophilia.
There are three main types, which are each treated differently. Type 1 or 2 occurs when one parent has passed on a faulty gene, and, very rarely, Type 3 vW is the result of both parents passing on a faulty vW gene – this leads to a more severe bleeding condition.
Treatment will be tailored to each person’s specific condition, but options include Tranexamic Acid (Cyklokapron), Desmopressin (DDAVP) and von Willebrand Factor replacement therapy.