von Willebrand Disease

It is important for people with blood disorders to be carefully
It is important for people with blood disorders to be carefully monitored by a physician. Betsy Clough has worked closely with John Farnen, MD, Gundersen Center for Cancer & Blood Disorders, to effectively manage and treat her disease. Read Betsy's story...

The bleeding disorder, von Willebrand disease, can’t be cured but it can be treated and managed, allowing most patients to lead normal, active lives. Gundersen’s Center for Cancer & Blood Disorders is working to improve the diagnosis and treatment of von Willebrand disease for the one in every 100 to 1,000 people affected by this disorder.

People with von Willebrand disease have low levels or abnormal von Willebrand factor in their blood which causes clotting problems. It is the most common inherited bleeding disorder, but it takes many forms, so some people are misdiagnosed or have such mild symptoms that they go undiagnosed.

Symptoms and their severity vary with type, but generally patients with von Willebrand disease experience:
  • Iron-deficiency anemia
  • Frequent large bruises from even minor bumps or injuries
  • Frequent or hard-to-stop nosebleeds, especially in children
  • Heavy bleeding after surgery, dental work or injury
  • Heavy or extended menstrual bleeding
The milder and most common forms of von Willebrand disease are usually inherited from one parent. The most severe type, occurring in 1 to 10 percent of those with the disorder, is usually the result of both parents carrying the gene, even if it’s mild or asymptomatic in the parents. This form can cause potentially fatal spontaneous bleeding and looks similar to hemophilia. Patients have to be treated quickly for bleeding episodes.

Several factors need to be looked at when making a diagnosis of von Willebrand disease including medical and family history, a physical exam to look for unusual bruising or anemia, and special blood tests.

Treatment for von Willebrand disease is also based on the type and severity of the disorder. Patients with the milder forms generally only need treatment for surgery, tooth extraction or in cases of an injury. One of the most common treatments is a synthetic hormone given intravenously or as a nasal spray. To control heavy menstrual bleeding, physicians may recommend a procedure to destroy the uterine lining, or may prescribe a medication  to suppress menstrual bleeding.

A woman with von Willebrand disease should also consult a hematologist and perinatologist before becoming pregnant. Although blood levels of von Willebrand factor tend to increase during pregnancy, there may be more bleeding postpartum from a c-section or episiotomy. With precautions, most women with the disorder can have successful pregnancies.
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