About Von Willebrand disease
People with VWD have a low level of a substance called von Willebrand factor in their blood, or this substance doesn't work very well.
Von Willebrand factor helps blood cells stick together (clot) when you bleed. If there isn't enough of it or it doesn't work properly, it takes longer for bleeding to stop.
There's currently no cure for VWD. But the condition doesn't usually cause serious problems and most people with it can live normal, active lives.
Symptoms of von Willebrand disease
The symptoms of VWD may start at any age. They can range from very mild and barely noticeable to frequent and severe.
The main symptoms are:
- bruising easily or getting large bruises
- frequent or long-lasting nosebleeds
- bleeding gums
- heavy or long-lasting bleeding from cuts
- in women, heavy periods and bleeding during or after labour
- heavy or long-lasting bleeding after a tooth removal or surgery
In some people, there's also a small risk of problems such as bleeding in the gut (causing bleeding from the bottom) and painful bleeds into joints and muscles.
When to get medical help
You should see your GP if you have symptoms of VWD, especially if someone else in your family has it.
If your GP thinks you might have a bleeding problem, they may refer you to a hospital specialist for blood tests to check for conditions like VWD. Tell your doctor if you have a history of it in your family.
If you've already been diagnosed with VWD, contact your specialist if:
- you keep getting bleeds
- you've had a heavy bleed
- you're pregnant or planning a pregnancy – read pregnancy advice if you have VWD
Go to your nearest emergency department if you have very heavy bleeding or bleeding that won't stop.
Treatment and lifestyle advice for von Willebrand disease
There's currently no cure for VWD. But the condition can usually be controlled with medicines and some simple lifestyle measures.
Treating and preventing bleeds
If you have a bleed, applying pressure to the wound (or pinching the soft part of your nose if you have a nosebleed) for a few minutes may be all you need to do.
Your doctor may also give you medicine to help stop bleeding when it happens. If your doctor recommends medication, talk to them about the best option for you and ask about the side effects of each medicine.
These medicines can also be used before a procedure or operation to reduce the risk of bleeding. People with severe VWD may need to take them regularly to help prevent serious bleeds.
Treatments for heavy periods
If you have heavy periods as a result of VWD, speak to your GP or specialist about treatments to help control the bleeding.
They will discuss with you the most appropriate treatment options.
- Read more about treatments for heavy periods
If you have VWD, it's a good idea to:
- tell your surgeon or dentist about your VWD if you're due to have a procedure or operation – you may need to take medication to reduce the risk of bleeding before and afterwards
- tell your doctor or nurse about your VWD if you need a vaccination – they can give the injection just under your skin to avoid painful bleeding in your muscles
- avoid aspirin and anti-inflammatory drugs like ibuprofen unless your specialist advises you it's safe to use them, as these can make bleeding worse – use other medicines such as paracetamol instead
- ask your specialist if there are any activities you need to avoid – you should be able to take part in most sports and activities, but it's best to check first
Types of von Willebrand disease
There are several types of VWD.
The main types are:
- type 1 – the mildest and most common type. People with type 1 VWD have a reduced level of von Willebrand factor in their blood. Bleeding is mostly only a problem if they have surgery, injure themselves, or have a tooth removed
- type 2 – in people with this type of VWD, von Willebrand factor doesn't work properly. Bleeding tends to be more frequent and heavier than in type 1
- type 3 – the most severe and rarest type. People with type 3 VWD have very low levels of von Willebrand factor, or none at all. Bleeding from the mouth, nose and gut is common, and joint and muscle bleeds can occur after an injury
These three types are all inherited.
There's also a rare type that isn't inherited called acquired von Willebrand disease. This can start at any age and is usually associated with other conditions affecting the blood, immune system or heart.
How von Willebrand disease is inherited
VWD is often caused by a fault in the gene involved in the production of von Willebrand factor.
The type of VWD a person is born with mostly depends on whether they inherit copies of this faulty gene from one or both parents.
Speak to your specialist if you have VWD and are thinking of having a baby. If you have a family history of VWD and think you might be affected, tests should ideally be done before getting pregnant.