Von Willebrand Disease

What Are the Symptoms of Von Willebrand Disease?

• Nosebleeds that happen often and may be hard to stop.
• Bleeding gums from brushing teeth or flossing.
• Bleeding from injuries, shots (injections), or invasive procedures.
• Heavy menstrual periods.
• Blood in pee (urine) or poop (stool). This is rare.

How Is Von Willebrand Disease Diagnosed?

To diagnose VWD, your child may:

• Have blood tests.
• Have von Willebrand testing to see which type of VWD they have.
• Need to be tested again if they have mild or moderate VWD.

Types of VWD

• Type 1 – You make a normal VW protein, just not enough.
• Type 2 – You make a VW protein that doesn’t work right.
• Type 3 – You don’t make a VW protein.

Treatment

Treatment depends on your child’s symptoms and the type of VWD they have. They may be prescribed:

• Desmopressin (DDAVP^®) – A nasal spray that increases the von Willebrand and factor VIII (8) to help stop bleeding.
• Humate-P^® and VONVENDI^® – Two different blood-clotting factors to treat extra bleeding in emergencies or before surgery. It is given by IV through a vein.
• Aminocaproic acid (Amicar^®) and tranexamic acid (Lysteda^®) – This medicine slows down bleeding. It keeps blood clots in the injured area from dissolving.

Safety

• Do not give your child aspirin, ibuprofen (Motrin^®, Advil^®), or naproxen (Aleve^®, Naprosyn^®). These may make bleeding worse.
  • Only give acetaminophen (Tylenol^®), meloxicam (Mobic^®), or celecoxib (Celebrex^®) for pain or fever.
  • Check the label on over-the-counter cold, flu, and pain medicines. These may contain aspirin or ibuprofen.
• Tell your child’s doctor, health care provider, or blood doctor (hematologist) if they’re using herbal remedies or over-the-counter medicines.
• Contact the hemophilia center if your child needs surgery or dental work.
• Your child should get vaccines recommended by their doctor or health care provider.
• Check with your child’s hematologist before they start any sports or intense activities.
• Have your child wear medical identification (ID). This can be a bracelet, necklace, or sports band. This lets others know about their condition in emergencies.

When to Call the Doctor

Call your child’s doctor, health care provider, or hematologist if they have:

• Been hit hard on their head or neck.
• Nosebleeds that last more than 15 minutes or happen more often.
• Small cuts that bleed for more than 15 minutes or are not controlled.
• Menstrual periods that are heavier than normal or last more than 7 days, or if they’re passing clots bigger than a quarter.
• Bleeding from the mouth, lips, or gums that lasts more than 15 minutes after applying pressure and ice.
• Blood in their pee (urine) or poop (stool).
• A procedure, surgery, or dental work scheduled.
• Any side effects that aren’t getting better.
• Signs or symptoms of iron deficiency like headaches, pale skin, dizziness, or craving unusual foods, like ice chips or clay.
• Swollen, tender, warm, painful, or stiff joints.
• Severe back pain.
• A raised bump under the skin.

Other Information

• Tell anyone watching your child that they have VWD and what signs to watch for. This includes family, babysitters, coaches, and school staff.
• Your child should see a hematologist each year.
• Call your child’s doctor, health care provider, or hematologist for any questions.

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