Congenital Von Willebrand Disease
Medically reviewed by Drugs.com. Last updated on Apr 2, 2024.
Congenital von Willebrand disease (CVWD) is an inherited blood disorder that causes heavy bleeding or bleeding that will not stop. CVWD is present at birth. You may not have enough von Willebrand factor (VWF), or it may not work correctly. VWF is a protein in the blood that helps it clot.
DISCHARGE INSTRUCTIONS:
Call your local emergency number (911 in the US) if:
- You have chest pain or tightness.
- You have trouble breathing.
- You have a seizure or faint.
Return to the emergency department if:
- You cannot control your bleeding episodes, even after applying pressure.
- You have many large bruises or joint swelling.
- You vomit blood or have bloody or black bowel movements.
- You have blood in your urine.
Call your doctor or hematologist if:
- You feel tired and weak.
- You have a fever.
- You have nausea, are vomiting, or have a severe headache.
- You have questions or concerns about your condition or care.
Medicines:
You may need any of the following:
- Desmopressin helps your body make more VWF.
- Steroids may be given to decrease inflammation.
- Birth control pills may be given if you are female to increase VWF levels in your blood. This may also help control heavy monthly periods.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell your provider 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.
Manage a bleeding episode:
- Apply direct pressure to the bleeding area. Use a clean cloth. Hold pressure constantly for at least 10 to 15 minutes and until the bleeding stops. Place another cloth over the first cloth if it gets soaked with blood.
- Pinch the end of your nose during a nosebleed. Hold pressure constantly for 10 to 15 minutes. Breathe through your mouth and lean forward to keep blood from going down your throat.
- Rest when you have a nosebleed. Place 2 to 3 pillows behind your head when you are 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 ways to help control heavy menstrual bleeding.
Prevent bleeding episodes:
- Do not play contact sports, such as football or hockey. Contact sports increase your risk for bleeding or bruising. Ask your hematologist or healthcare provider which sports and activities are best for you.
- Do not use aspirin or NSAIDs, such as ibuprofen. These may thin your blood or increase your risk for bleeding. Ask your hematologist or provider before you take other over-the-counter medicines. Some may worsen VWD.
Follow up with your doctor 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.
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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.
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