Von Willebrand disease

Von Willebrand disease does not always cause symptoms unless you have an injury. Sometimes it's found when you have more bleeding than usual after surgery or giving birth.

Symptoms of von Willebrand disease can include:

Some people also have more severe symptoms, such as:

See a GP if:

  • you often get lots or bruises or large bruises
  • you have regular nosebleeds
  • you've had heavy periods for several months, or it's affecting your life
  • you've had blood in your poo for 3 weeks
  • your parent, child, brother or sister has been diagnosed with von Willebrand disease – you may also need tests for this condition

Ask for an urgent GP appointment or get help from NHS 111 if:

  • you have blood in your pee
  • your poo is black or dark red

You can call 111 or get help from 111 online.

Go to A&E if:

  • you have a nosebleed that lasts longer than 10 to 15 minutes, or the bleeding seems very heavy
  • you have an injury or cut and cannot stop the bleeding
Find your nearest A&E

Von Willebrand disease can be hard to diagnose because the symptoms are often mild.

A GP may examine you to check symptoms such as bruising.

They'll ask about whether you've had bleeding in the past, and whether anyone in your family also has bleeding problems.

If they think you could have von Willebrand disease, they'll refer you to a specialist in blood conditions (haematologist).

Von Willebrand disease is diagnosed using blood tests. You'll need to have several blood tests over a few days or weeks.

If tests show you have von Willebrand disease, the specialist will tell you which type you have. Types 1 and 2 are the most common and usually cause mild symptoms. Type 3 is rare and causes more severe symptoms.

Important

If you're diagnosed with von Willebrand disease, your immediate family should also be offered tests as there's a chance they could also have the condition.

If you have von Willebrand disease there are things you can do to reduce the risk of bleeding and complications caused by bleeding.

Do

  • eat foods containing iron, such as dark-green leafy vegetables, meat and pulses, to help prevent anaemia – your doctor may also suggest taking iron supplements

  • brush your teeth at least twice a day and have regular dental check-ups to help avoid dental treatment for tooth decay

  • keep a first aid kit with you for treating minor injuries

  • consider carrying medical ID in case you have a more serious injury

Don't

  • do not take medicines that can cause bleeding, such as ibuprofen and other non-steroidal anti-inflammatory drugs (NSAIDs) or aspirin

  • do not take any herbal remedies or supplements without checking with a pharmacist or doctor – some can cause problems if you have von Willebrand disease

  • do not take part in sports or activities that are likely to cause injuries, particularly if you have more severe symptoms

Getting specialist advice

Speak to your specialist care team for advice if:

  • you're due to have surgery, a procedure or dental treatment
  • you're pregnant or trying to get pregnant – you'll need to be monitored during your pregnancy and the birth

If you need any medical or dental treatment, it's important to also tell the person treating you that you have von Willebrand disease.

Treatment for von Willebrand disease depends on the type you have and how severe your symptoms are.

You can usually use first aid to treat less serious bleeding yourself, such as cuts and grazes or nosebleeds.

If you have type 1 or type 2 and mild symptoms you'll only need treatment when you get more serious bleeding, or to help prevent bleeding, for example before surgery or dental treatment.

If you have type 3 or more severe symptoms you may also need regular treatment to help prevent bleeding.

To treat or prevent bleeding you may be offered:

  • tranexamic acid, usually taken as tablets
  • desmopressin, taken as an injection, through a drip into a vein (infusion), or as a nasal spray – this medicine does not work for everyone, so you'll need a trial first to see if it will help your symptoms
  • a treatment to help your blood clot called factor replacement therapy, given through a drip into your vein (infusion) – this is used for more severe symptoms

If you have heavy periods your care team will usually recommend:

Von Willebrand disease is nearly always caused by the genes you inherit from your parents.

The most severe type of von Willebrand disease, called type 3, happens when a child inherits the gene from both parents.

If you have type 1 or type 2, there's a 1 in 2 chance that your child will also inherit it.

If you have type 3, your children will also have von Willebrand disease, but they'll usually have type 1 or type 2, with less severe symptoms.

In very rare cases von Willebrand disease can be caused by other conditions that affect your blood, such as heart problems or blood cancer, or by taking certain medicines.

If you or someone in your family lives with von Willebrand disease you can get support from the Haemophilia Society.

If you have von Willebrand disease, your care team will pass information on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.