Von willebrand disease

Von Willebrand Disease

What is von Willebrand disease?

Von Willebrand disease is a bleeding disorder. When you have this problem, it takes longer for your blood to form clots, so you bleed for a longer time than other people.

Normally when a person starts to bleed, small blood cells called platelets go to the site of the bleeding. These cells clump together to help stop the bleeding. If you have von Willebrand disease, your blood doesn't clot well. This happens because you don't have a certain protein in your blood. Or you may have low levels of the protein or a form of it that's not normal. The protein is called the von Willebrand factor. It helps your blood to clot by helping the platelets stick together.

The disease can range from mild to severe. It is mild in most people. It can stay the same or get better or worse as you get older.

What are the symptoms of von Willebrand disease?

Bleeding a lot is the main symptom of von Willebrand disease. How severe the bleeding is will be different for each person.

When the disease is mild, symptoms include:

  • Frequent nosebleeds.
  • Some bleeding from the gums.
  • Heavy menstrual periods in women.
  • Bruises that appear for no reason.
  • Heavy bleeding after an injury or surgery.

When the disease is more severe, you may also have:

  • Blood in the urine.
  • Bruising easily.
  • Black, tarry, or bloody stools.
  • Bleeding into the joints, which causes stiffness, pain, and swelling. This symptom is rare.

How is von Willebrand disease diagnosed?

Von Willebrand disease can be hard to diagnose. Some people who have mild von Willebrand disease bleed about the same amount as other people do. You may not notice any symptoms until you bleed a lot after an injury, dental procedure, or surgery.

Your doctor will ask you how often and how much you bleed. If your doctor thinks you may have a problem with clotting, your doctor may suggest:

  • Blood tests that measure von Willebrand factor activity levels or von Willebrand factor antigen.
  • Genetic testing to look for gene changes and types of von Willebrand disease.

How is von Willebrand disease treated?

If you have von Willebrand disease, your treatment may include:

  • Medicine that helps your body release more of the protein that helps your blood to clot.
  • Replacement therapy, which replaces the protein that helps your blood to clot.
  • Medicines that help stop blood clots from breaking down.
  • Birth control pills, or an intrauterine device (IUD) that contains hormones. These treatments help control heavy menstrual periods.

Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.

You may take medicine to prevent heavy bleeding if you have an injury, are going to have surgery, or are about to give birth.

Self-care

You may need to avoid nonsteroidal anti-inflammatory drugs (NSAIDs). These medicines include aspirin, ibuprofen (such as Advil or Motrin), and naproxen (Aleve). You also may need to avoid medicines (called blood thinners) that prevent blood clots.

Tell all your doctors and other health professionals, such as your dentist, that you have this disease. Doctors need to know about it before you have any procedures, because you may be at risk for dangerous bleeding. Wear medical alert jewelry. This lets others know that you have a bleeding disorder. You can buy it at most drugstores.

Avoid sports or activities where injury and bleeding are likely.

How can you care for yourself when you have von Willebrand disease?

Take your medicines as prescribed. Avoid blood thinners and nonsteroidal anti-inflammatory drugs (NSAIDs) like aspirin and ibuprofen. Try to prevent injury. You may need to avoid contact sports like football and hockey. Tell all your health providers, including dentists, that you have this disease. And wear medical alert jewelry or carry a wallet card.

Von Willebrand disease: When to call

Call 911 anytime you think you may need emergency care. For example, call if:

  • You passed out (lost consciousness).
  • You have signs of severe bleeding, which includes:
    • You have a severe headache that is different from past headaches.
    • You vomit blood or what looks like coffee grounds.
    • Your stools are maroon or very bloody.

Call your doctor now or seek immediate medical care if:

  • You are dizzy or lightheaded, or you feel like you may faint.
  • You have abnormal bleeding, such as:
    • Your stools are black and look like tar, or they have streaks of blood.
    • You have blood in your urine.
    • You have joint pain.

Watch closely for changes in your health, and be sure to contact your doctor if:

  • You do not get better as expected.

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The content above contains general health information provided by Healthwise, Incorporated, and reviewed by its medical experts. This content should not replace the advice of your healthcare provider. Not all treatments or services described are offered as services by us. For recommended treatments, please consult your healthcare provider.