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Acquired Von Willebrand Syndrome
WHAT YOU NEED TO KNOW:
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 disorder. 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 is difficult for you to stop bleeding because your blood does not clot properly
WHILE YOU ARE HERE:
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.
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 OK 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:
Caregivers will keep track of the amount of liquid you are getting. They also may need to know how much you are urinating. Ask how much liquid you should drink each day. Ask caregivers if they need to measure or collect your urine.
- 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. It is also used when you have a chronic condition, such as lupus or arthritis. You may need many weeks of treatment. Each infusion can take from 2 to 5 hours.
- Steroids: This medicine may be given to decrease inflammation.
- Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
- Chest x-ray: This is a picture of your lungs and heart. Caregivers use it to see how your lungs and heart are doing. Caregivers may use the x-ray to look for signs of infection like pneumonia, or to look for collapsed lungs. Chest x-rays may show tumors, broken ribs, or fluid around the heart and lungs.
- Joint x-ray or scan: This is a picture of the bones and tissues in your joints, and may be done to check for bleeding. Joints are the places in your body where two bones meet. You may be given dye as a shot into your joint before the x-ray or scan. This dye will help your joint show up better on the x-ray.
Treatment of AVWS includes treating its underlying cause. This may include treating a cancer or stopping a certain medicine for a while. You may also need a blood plasma replacement therapy to control or prevent bleeding. This is done by injecting or giving factor VIII concentrate that is rich in VWF through an IV. Factor concentrates help the blood clot and stop bleeding following accidents, surgery, or spontaneous bleedings. In severe AVWS, this therapy may also be given regularly every few days to prevent bleeding. If you refuse a blood replacement, your condition may get worse. Ask your healthcare providers for more information on receiving blood concentrates.
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.
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 caregivers to decide what care you want to receive. You always have the right to refuse treatment.
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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.