Learning About 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 causes it?

Von Willebrand 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 disease. This rare form of the disease isn't inherited. Instead, it seems to be caused by certain diseases or medicines that decrease the amount of von Willebrand protein in your blood.

What are the symptoms?

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 the 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.

When should you call for help?

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.