Von Willebrand Disease

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KEY POINTS

• Von Willebrand disease is a bleeding disorder that is inherited. It is a rare condition that does not allow your child’s blood to clot normally.
• Treatment depends on whether your child has mild, moderate, or severe Von Willebrand disease. Treatment may include pressure dressings on your child's minor cuts, and medicines to help his body form clots.
• Your child should carry an ID card or wear a medical ID bracelet or necklace that says he has Von Willebrand disease.

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What is Von Willebrand disease?

Von Willebrand disease (VWD) is a bleeding disorder. It is a rare condition that does not allow your child’s blood to clot normally. VWD may be mild, moderate, or severe.

VWD is more common than hemophilia, another bleeding disorder. VWD happens in both males and females.

What is the cause?

VWD is inherited, which means that it is passed from parents to children through their genes. Genes are inside each cell of your body. They contain the information that tells your body how to develop and work.

In VWD, your child either has low levels of a certain protein in the blood or the protein doesn't work well. The protein is called von Willebrand factor, and it helps blood clot.

What are the symptoms?

The main symptom is bleeding that lasts longer than normal after injuries or surgery. Your child may also have internal bleeding. Examples of abnormal bleeding are:

• Frequent, large bruises from minor bumps or injuries
• Frequent or hard-to-stop nosebleeds
• Prolonged bleeding from the gums after a dental procedure
• Heavy bleeding after a cut or other accident
• Heavy bleeding after surgery
• Heavy or prolonged menstrual bleeding in teens
• Blood in bowel movements from bleeding in the intestines or stomach
• Blood in the urine from bleeding in the kidneys or bladder

How is it diagnosed?

Some children with VWD are diagnosed in the first 2 years of life. In some cases, especially if the symptoms are mild, the diagnosis may not be made until your child is several years old. The diagnosis is based on family history, unusual bleeding, and blood tests.

How is it treated?

There is no cure for VWD but there are treatments. Treatment depends on whether it is mild, moderate, or severe. Most people have a mild form that doesn’t cause life-threatening bleeding. Medicines are used to:

• Increase the amount of von Willebrand factor in the blood
• Replace von Willebrand factor
• Prevent the breakdown of blood clots
• Control heavy menstrual bleeding in teens

If your child has lost a lot of blood, your child may need a blood transfusion.

Hemophilia treatment centers are in many areas of the US. These centers provide treatment, education, and support to people who have VWD and to their families.

How can I take care of my child?

• Make sure your child stays physically active by biking, swimming, and walking. This will keep your child’s muscles strong and protect the joints from injury. Your child should avoid contact sports such as football, hockey, or soccer, and other activities that are more likely to cause internal bleeding.
• Make sure your child uses the right safety gear for sports when practicing as well as when playing. Check outdoor play areas for possible dangers.
• Don’t give aspirin and non-steroidal anti-inflammatory drugs (NSAIDS), such as ibuprofen and naproxen to your child. Also, children and teens who take aspirin are at risk for a serious illness called Reye’s syndrome. Give acetaminophen when your child needs pain medicine. Acetaminophen may cause liver damage or other problems. Read the label carefully and give your child the correct dose as directed. Do not give more doses than directed. To make sure you don’t give your child too much, check other medicines your child takes to see if they also contain acetaminophen. Unless recommended by your healthcare provider, your child should not take this medicine for more than 5 days.
• Make sure your child has regular check-ups and stays up to date on recommended immunizations (shots).
• Let your child's dentist know that your child has VWD. Notify your healthcare provider or hemophilia treatment center before any dental procedure. Your child may need treatment before the procedure to prevent bleeding.
• Make sure that friends, family, teachers, coaches, and the school nurse know that your child has VWD.
• Your child should carry an ID card or wear a medical ID bracelet or necklace that says your child has VWD. If your child needs emergency care, surgery, or lab tests, this helps the healthcare provider know how to treat your child.

For more information, contact:

• Genetic and Rare Diseases Information Center
  888-205-2311
  https://rarediseases.info.nih.gov/diseases/7867/von-willebrand-disease