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:

• bruising easily
• frequent nosebleeds
• bleeding gums
• bleeding more than usual after an injury or cut
• heavy periods

Some people also have more severe symptoms, such as:

• heavy bleeding that's difficult to stop, for example after an injury or procedure
• blood in your poo
• blood in your pee (urine)
• pain, swelling and stiffness in a joint

• 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

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.

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.

• 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

• 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

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:

• hormonal contraceptives that can make periods lighter, such as the combined pill or intrauterine system (IUS)
• tranexamic acid

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.

Symptoms of von Willebrand disease can include bruising, nosebleeds and heavy periods. Many people have no symptoms unless they have an injury.

Von Willebrand disease is diagnosed using blood tests. If you have it your close family members may also need to have tests.

If you have Von Willebrand disease ways to reduce the risk of bleeding or complications include eating foods with iron and avoiding certain medicines.

Treatments for von Willebrand disease include medicines that treat or prevent bleeding, and a treatment called factor replacement therapy.