Von Willebrand Disease Diagnosis

Why is it difficult to diagnose von Willebrand disease Type 1?

The bleeding symptoms of von Willebrand disease are also common bleeding episodes experienced by many people, even those without von Willebrand disease, and may not be considered unusual or abnormal. As a result, evaluation for a bleeding disorder is often delayed in people with von Willebrand disease.

The body’s ability to make von Willebrand factor varies depending on various factors such as exercise, emotional stress, and many other factors, so it is quite often difficult to diagnose von Willebrand disease. Because of this, it is often necessary to repeat laboratory tests for von Willebrand disease if they initially return as normal.

How do they make a diagnosis of von Willebrand disease?

The diagnosis of von Willebrand disease should include a detailed history of bleeding in an individual, a family history of bleeding, physical examination, and blood test results.

In women with von Willebrand disease, there is sometimes a significant delay in being diagnosed with von Willebrand disease. Why is this?

The most common symptoms of von Willebrand disease in women include easy bruising, nosebleeds, heavy periods, development of ovarian cysts, endometriosis, and bleeding during the postpartum period.

These symptoms are common in women in general and therefore are not considered as a “disease” state or abnormal. Diagnosis of von Willebrand disease in these women may be delayed until they or their family members present with anemia or other complications due to bleeding.

Learn more about IHTC's Girls Only (GO) Clinic for females ages 11-18