Von Willebrand's disease is a bleeding disorder. When you have this problem, it takes longer for your blood to form clots, so you bleed for a longer time than other people.
Normally when a person starts to bleed, small blood cells called platelets go to the site of the bleeding. These cells clump together to help stop the bleeding. If you have von Willebrand's disease, your blood doesn't clot well. This happens because you don't have a certain protein in your blood. Or you may have low levels of the protein or a form of it that's not normal. The protein is called the von Willebrand factor. It helps your blood to clot by helping the platelets stick together.
The disease can range from mild to severe. It is mild in most people. It can stay the same or get better or worse as you get older.
Von Willebrand's disease usually is passed down through families (inherited). If you have the disease, your doctor may suggest that your family members get tested for it too.
It's also possible to get the disease later in life. This is called acquired von Willebrand's disease. This rare form of the disease isn't inherited. Instead, it seems to be caused by certain diseases or certain medicines that cause a problem with your immune system. Your body makes antibodies that affect the von Willebrand protein in your blood.
Bleeding a lot is the main symptom of von Willebrand's disease. How severe the bleeding is will be different for each person.
When the disease is mild, symptoms include:
When the disease is more severe, you may also have:
If you have severe von Willebrand's disease, your treatment may include:
Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor or nurse call line if you think you are having a problem with your medicine.
You may take medicine to prevent heavy bleeding if you have an injury, are going to have surgery, or are about to give birth.
You may need to avoid non-steroidal anti-inflammatory drugs (NSAIDs). These medicines include aspirin, ibuprofen (such as Advil or Motrin), and naproxen (Aleve). You also may need to avoid medicines (called blood thinners) that prevent blood clots.
Tell all your doctors and other health professionals, such as your dentist, that you have this disease. Doctors need to know about it before you have any procedures, because you may be at risk for dangerous bleeding. Wear medical alert jewellery. This lets others know that you have a bleeding disorder.
Avoid sports or activities where injury and bleeding are likely.
Call 911 anytime you think you may need emergency care. For example, call if:
Call your doctor or nurse call line now or seek immediate medical care if:
Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:
Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.
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Current as of: October 13, 2016
E. Gregory Thompson, MD - Internal Medicine
& Adam Husney, MD - Family Medicine & Martin J. Gabica, MD - Family Medicine & Brian Leber, MDCM, FRCPC - Hematology
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