What is acquired von Willebrand syndrome?
Acquired von Willebrand syndrome (AVWS) causes heavy bleeding or bleeding that will not stop. It is also called acquired von Willebrand disease. It is a blood disorder that develops later in life usually because of some other illness or disease. Von Willebrand factor (VWF) is a protein in the blood that helps it clot. If you have AVWS, you may not have enough von Willebrand factor in your blood, or it may not work correctly. This makes it difficult for you to stop bleeding because your blood does not clot properly.
What increases my risk for acquired von Willebrand syndrome?
- Diseases: The VWF may attach itself to cancer cells, such as in leukemia, lymphomas, or kidney tumors. This will decrease the amount of VWF in your body. Scleroderma, lupus, or heart diseases may also increase your risk. Hypothyroidism may decrease VWF in your blood.
- Immune problems: A problem with your immune system can cause your body to attack its own cells. This may make you more likely to develop AVWS.
- Medicines: Medicines used to treat cancer, depression, or infections may cause AVWS. Ask your healthcare provider if any of the medicines you take can cause AVWS.
- Toxic chemicals: Frequent exposure to toxic chemicals, such as pesticides, may increase your risk of AVWS.
What are the signs and symptoms of acquired von Willebrand syndrome?
- Bleeding too much or too long from wounds, after surgery, or after having a tooth pulled
- Frequent bleeding from the gums or nose
- Bowel movements that are black or dark
- Urine that is pink or red
- Women may have heavy monthly periods, or heavy bleeding when giving birth
How is acquired von Willebrand syndrome diagnosed?
Your healthcare provider will ask about your medical history and the details of your bleeding episodes. Tell your healthcare provider if other family members have AVWS or other bleeding problems. You will have blood tests to check VWF, platelets, and other clotting factors.
How is acquired von Willebrand syndrome treated?
There is no cure for AVWS. The goal of treatment is to prevent and control bleeding. You may have any of the following:
- Desmopressin: This helps your body make more VWF and other things your blood needs to clot properly.
- Replacement therapy: This is concentrated VWF that is given through IV infusion.
- Immune globulins: This medicine is given as a shot or an IV infusion to make your immune system stronger. You may need immune globulins to treat or prevent an infection.
- Steroids: This medicine may be given to decrease inflammation.
What are the risks of acquired von Willebrand syndrome?
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. Without treatment, your health, quality of life, and ability to function may decrease.
When should I contact my healthcare provider?
Contact your healthcare provider if:
- You feel very tired and weak.
- You have a fever.
- You have nausea, vomiting, or a severe headache.
When should I seek immediate help?
Seek help immediately or call 911 if:
- You cannot control your bleeding episodes, even after applying pressure.
- You have difficulty breathing, chest pain or tightness.
- You have many large bruises in your body, or swelling in your joints.
- You have difficulty breathing.
- You have a seizure or faint.
- You vomit blood or have blood or black stools.
- You have blood in your urine.
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 caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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