Acquired Von Willebrand Syndrome

Medically reviewed by Drugs.com. Last updated on Apr 6, 2025.

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Acquired von Willebrand syndrome (AVWS) is a blood disorder that causes heavy bleeding or bleeding that will not stop. AVWS develops later in life, usually because of another illness or disease. AVWS may also develop if you do not have enough von Willebrand factor (VWF), or it does not work correctly. VWF is a protein that helps blood clot.

WHILE YOU ARE HERE:

Informed consent

is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.

Activity:

You may need to rest in bed at first. You may need to breathe through your mouth or lean forward when sitting if a nosebleed is present. Use 2 to 3 pillows when lying down to help you breathe easier. Your healthcare provider will tell you when it is okay to get out of bed. Call your healthcare provider before getting up for the first time. If you ever feel weak or dizzy, sit or lie down right away.

Intake and output

may be measured. Healthcare providers will keep track of the amount of liquid you are getting. They also may need to know how much you are urinating. Ask healthcare providers if they need to measure or collect your urine.

Medicines:

• Desmopressin helps your body make more VWF.
• Replacement therapy is concentrated VWF that is given through IV infusion.
• Immune globulins is medicine given as a shot or an IV to make your immune system stronger. Immune globulins help your body prevent or fight an infection. The infusion may take 2 to 4 hours. You may need this treatment every 3 to 4 weeks.
• Steroids may be given to decrease inflammation.

Tests:

• Blood tests give healthcare providers information about how your body is working.
• A chest x-ray is a picture of your lungs and heart. Healthcare providers may use the x-ray to look for signs of infection, such as pneumonia, or to look for a collapsed lung. Chest x-rays may show tumors, broken ribs, or fluid around the heart and lungs.
• Joint x-ray or scan pictures of the bones and tissues in your joints may be used to check for bleeding. Contrast liquid may be injected into your joint to help your joint show up better on the x-ray. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid.

Treatment:

• Any underlying cause will be treated. This may include treating a cancer or stopping a certain medicine for a while.
• Blood plasma replacement therapy is used to control or prevent bleeding. Factor VIII concentrate that is rich in VWF is given through an IV. Factor concentrates help the blood clot and stop bleeding following accidents, surgery, or spontaneous bleedings. If you have severe AVWS, this therapy may be given every few days to prevent bleeding.

RISKS:

Treatment may cause unwanted side effects. Medicines may cause nausea, vomiting, headache, flushing, fast heartbeat, or seizures. Your body could react poorly to replacement therapy. The new blood cells may attack healthy cells and cause you to have a serious allergic reaction. If AVWS is not treated, you may have frequent bleeding. This may cause you to lose too much blood, which can be life-threatening and may damage other organs.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment.

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