Von Willebrand Disease Causes Excessive Bleeding

Q:  When my teenage grand-niece had her tonsils removed, she bled badly. The doctor suggested that her parents be tested for bleeding disorders. It turns out her mother (my brother's daughter) carries the gene for von Willebrand disease. She was told the male carries the disease.

Is it possible I am also a carrier? I have had surgery with no problems.

A:  Whenever our skin or mucus membranes are cut, about a dozen clotting factors work together to make a clot. One clotting factor is von Willebrand factor, and when this factor is mutated, you have von Willebrand disease. People with von Willebrand disease may bleed easily, particularly after surgery on mucus membranes, such as a tonsillectomy or oral surgery.

Nearly 1% of all people have von Willebrand disease, but some are only affected mildly and some are never diagnosed. Women with von Willebrand disease are more often diagnosed because they may notice increased menstrual bleeding.

Von Willebrand disease is most commonly transmitted from a parent to a child, and men and women have an equal chance of getting the mutated gene. If your brother's daughter has von Willebrand disease, there is about a 50% chance your brother was the carrier. If your brother has von Willebrand disease, it is very likely one of your parents also had the disease, and then you would have about a 50% chance of also carrying the mutated gene.

Overall, you have about a 25% chance of being a carrier. However, you needn't be tested unless you are planning a surgery, particularly since you haven't noticed any bleeding problems.

Julie L. Mitchell, MD, MS, is an Assistant Professor of Medicine at the Medical College of Wisconsin. She practices internal medicine at the Froedtert & Medical College General Internal Medicine Clinic – East. Her column also appears in the Milwaukee Journal-Sentinel.

For more information, see the HealthLink article One Percent of Americans Have Von Willebrand Disease: What Is It?

"Dear Doctor" is a compilation of patient questions answered by doctors from the Medical College of Wisconsin.