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Congenital Von Willebrand Disease
WHAT YOU NEED TO KNOW:
Congenital von Willebrand disease, also known as congenital VWD, causes heavy bleeding or bleeding that will not stop. It is an inherited blood disorder that is present at birth. Von Willebrand factor (VWF) is a protein in the blood that helps it to clot. If you have congenital VWD, 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.
- Avoid aspirin, ibuprofen, and other nonsteroidal anti-inflammatory drugs (NSAIDS). Ask your healthcare provider before you take any over-the-counter medicines because they may worsen your clotting disorder.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Follow up with your healthcare provider or hematologist as directed:
You will need regular blood tests since VWF may change over time. Write down your questions so you remember to ask them during your visits.
Avoid contact sports:
Do not play contact sports, such as football and basketball, to prevent bleeding or bruising. Ask your healthcare provider which sports and activities are best for you.
Self-care during a bleeding episode:
- Apply direct pressure to the bleeding area using a clean cloth and hold the pressure constantly for at least 10 to 15 minutes and until the bleeding stops. Place another cloth on over the first cloth if it gets soaked with blood.
- Pinch the end of your nose during a nosebleed and hold pressure constantly for 10 to 15 minutes. Breathe through your mouth and lean forward to keep blood from going down the back of your throat.
- Rest when you have a nosebleed. Place 2 to 3 pillows behind your head when lying down. This will help you breathe easier. If you ever feel weak or dizzy, sit or lie down right away.
- Use extra pads during your monthly periods. Ask your healthcare providers about other treatments to help control heavy menstrual bleeding.
Contact your healthcare provider or hematologist if:
- You feel very tired and weak.
- You have a fever.
- You have nausea, vomiting, or a severe headache.
- You have questions or concerns about your condition or care.
Seek care 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.
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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.
Learn more about Congenital Von Willebrand Disease (Discharge Care)
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