What is von Willebrand Disease?

What is von Willebrand Disease?

Further awareness about what is common vs normal for women with heavy menstrual cycles has been receiving attention in the news.

Studies have helped researchers pinpoint that 20% of women with heavy menstrual periods usually have a blood disorder, and one of the most common is von Willebrand Disease (VWD).

A commonly inherited bleeding disorder, VWD affects about 1% of Americans, according to the Centers for Disease Control and Prevention. The condition means that a person’s von Willebrand Factor (VWF) is either at low levels or is not working to clot the blood like it should. Though it can be present at any age, men or women, it can cause health issues like frequent bruising and risks as serious as bleeding out or postpartum hemorrhaging.

“Von Willebrand Disease is a long-standing bleeding disorder,” shares Dr. Ilia Sumoza, hematologist and oncologist, for Advocate Medical Group in Downers Grove and Darien, Ill. “One would think it would be easy to detect this blood disorder, but sometimes patients with VWD don’t know it because the signs and symptoms may be mild or absent.”

There are three types of VWD, Dr. Sumoza says:

  • Type 1: More than 75% of individuals with VWD have this type, which is primarily characterized by reduced levels of the VWF protein. People with VWD Type 1 usually have the mild or absent symptoms.
  • Type 2: This type is characterized for normal quantities of VWF, but the body still does not work properly for stopping the bleeding. There are four subtypes of Type 2 VWD.
  • Type 3: This is the most dangerous type and rare form in which no to very little VWF protein levels are detected.

All types are inherited, whether through one parent or both. It is common for a child or adolescent to be diagnosed with VWD, which then requires the parents to come in for testing too since at least one of them has it.

Dr. Sumoza says that the most common symptoms are abnormal bleeding, such as excessive bleeding from minor injury, surgery or dental work, prolonged nose bleeds, heavy menstrual periods or easy bruising among others.

If you have symptoms of VWD, Dr. Sumoza suggests:

  • Scheduling an appointment with your primary physician: Your doctor will ask questions about your personal and family history of bleeding and will check for unusual bruising or signs of recent bleeding.
  • Specialist Referral: Generally, your primary physician will refer you to a hematologist for testing if they confirm you have signs of VWD.
  • Testing: At the hematologist’s office, most patients will have their blood drawn and tested for complete blood count panel and coagulations studies for an initial evaluation; which, will confirm symptoms of excessive bleeding and bruising.
  • Treatment: Additional testing will determine the VWD type to assist with determining the best plan of treatment. Besides knowing the VWN type, treatment is also based on the severity and site of bleeding, and any previous responses to therapy. Standard treatments include Desmopressin (DDAVP), which stimulates the release of VWF from your cells, antifibrinolytics medications, which help prevent the breakdown of blood clots, and Factor replacement therapy, which assists to replace the VWF that’s not present or working incorrectly.

“Getting diagnosed with VWD does not have to be feared,” says Dr. Sumoza, “In fact, this can be the beginning of getting help to limit missing school or work, less linens and clbyothes to clean, and alleviating stress, anemia, fatigue and dizziness in one’s life.”

Are you trying to find a doctor? Look here if you live in Illinois. Look here if you live in Wisconsin. 

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  1. I suffered from extremely heavy bleeding from my very first period (1968). The doctor put me on birth control pills to regulate me. I stayed on them until after I was married until another doctor decided I should use an IUD (which caused a lot of other problems). I ended up with a hysterectomy at the age of 26. Do I need to be tested? Is this something that might cause me troubles this late in life (65)?

  2. Jennifer Benson

    Janice – We are sorry to hear about your past health experiences. Our recommendation is to schedule an appointment with your primary care physician for further assessment to see if you need to be tested.

  3. Why do we accept that *any* heavy bleeding is just “normal’? We wouldn’t if men had periods.

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About the Author

Jennifer Benson
Jennifer Benson

Jennifer Benson, health enews contributor, is coordinator of public affairs for Advocate Health Care and Aurora Health Care. She has 10+ years of community development and communication experience for non-profits and has a BA in Architecture from Judson University in Elgin, IL. Outside of work, you can find her planning the next adventure near water or rocks, re-organizing spaces, working on her Master’s in Public Health, caring for her senior citizen cat, keeping to healthy moving and eating disciplines and growing green things wherever she can find room.