Congenital Von Willebrand Disease
Medically reviewed by Drugs.com. Last updated on May 6, 2024.
AMBULATORY CARE:
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. CVWD is caused by a change in the gene that makes von Willebrand factor (VWF). VWF is a protein that helps blood clot. You may not have enough VWF, or it may not work correctly.
Signs and symptoms of CVWD:
- Bleeding too much or too long from wounds, after surgery, or after having a tooth pulled
- Easy bruising
- Bleeding from the gums or nose that happens often
- Bowel movements that are black or dark
- Urine that is pink or red
- Heavy monthly periods, or heavy bleeding when giving birth
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.
Seek care immediately 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.
Treatment:
CVWD cannot be cured. The goal of treatment is to prevent and control bleeding. You may need any of the following:
- Fibrin glue is placed directly on a wound to stop the bleeding. It is also called fibrin sealant.
- Desmopressin helps your body make more VWF.
- Replacement therapy is concentrated VWF that is given through IV infusion. This therapy may be given regularly to prevent bleeding if you have severe CVWD.
- Antifibrinolytic proteins is an IV treatment that helps stabilize blood clots after they form. This helps stop bleeding.
- 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.
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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