Symptoms Are Often Overlooked
It can be very difficult to accurately diagnose type 1 von Willebrand disease, so it is very important to find a doctor who is an expert in the disorder. At the Indiana Hemophilia and Thrombosis Center (IHTC) we have doctors and nurses who are experts in the diagnosis and treatment of von Willebrand disease, and who are focused on making sure you receive the best possible care.
Many bleeding symptoms associated with von Willebrand disease are common in the general population, so it can be difficult to identify bleeding symptoms that are abnormal or excessive. Moreover, because von Willebrand disease can run in families, symptoms such as easy bruising, bleeding gums, and heavy periods often appear normal to family members and are overlooked as potential signs of a bleeding disorder.
DISCLOSE YOUR BLEEDING HISTORY
If you or your child are being evaluated for von Willebrand disease, you should inform your healthcare provider about your personal or family history of bleeding. In general, healthcare professionals need to consider the following information:
- Your personal history of bleeding
- Your family history of bleeding
- Results of a recent physical examination
- Results of laboratory testing
The majority of people with von Willebrand disease have type 1. Confirming a diagnosis of type 1 von Willebrand disease may require a person to be tested more than once as von Willebrand factor levels can change depending on various factors, such as:
- Physical or emotional stress
- Use of birth control pills
These variables can increase von Willebrand factor levels, making it appear as if a patient doesn’t have von Willebrand disease, when in reality, they do. Diagnosing von Willebrand disease types 2 and 3 is often easier.
Project Red Flag, the National Hemophilia Foundation’s public awareness campaign, estimates that more than 2.5 million women in the United States have an undiagnosed bleeding disorder.
There is often a significant delay between the start of bleeding symptoms and diagnosis, with symptoms starting at around age 12 years and diagnosis occurring at about age 16 years. This delay is particularly common in women.
The Medical and Scientific Advisory Council of the National Hemophilia Foundation advises that von Willebrand disease and other inherited bleeding disorders should be considered when evaluating all females who are seen by healthcare professionals for abnormal or excessive bleeding.
Get answers to your questions about a VWD diagnosis