Learning About Von Willebrand's Disease

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What is von Willebrand's disease?

Von Willebrand's 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's 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 causes it?

Von Willebrand's disease usually is passed down through families (inherited). If you have the disease, your doctor may suggest that your family members get tested for it too.

It's also possible to get the disease later in life. This is called acquired von Willebrand's disease. This rare form of the disease isn't inherited. Instead, it seems to be caused by certain diseases or certain medicines that cause a problem with your immune system. Your body makes antibodies that affect the von Willebrand protein in your blood.

What are the symptoms?

Bleeding a lot is the main symptom of von Willebrand's 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 the disease treated?

If you have severe von Willebrand's 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.
  • Fibrin glue or thrombin powder, which you place on a wound to help control bleeding.

Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor or nurse call line 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 non-steroidal 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 jewellery. This lets others know that you have a bleeding disorder.

Avoid sports or activities where injury and bleeding are likely.

When should you call for help?

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

  • You cough up blood.
  • You vomit blood or what looks like coffee grounds.
  • Your stools are maroon or very bloody.

Call your doctor or nurse call line now or seek immediate medical care if:

  • You have worse or more frequent bruises or blood spots under your skin.
  • You have worse or more frequent nosebleeds.
  • You have worse or more frequent bleeding in your gums when you brush your teeth.
  • You have blood in your urine.
  • Your stools are black.
  • You have blood in your stools.
  • You have vaginal bleeding that is different (heavier, more frequent, at a different time of the month) than what you are used to.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if you have any questions.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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