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. It 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.

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

How can you care for yourself?

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.

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.

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 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.