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Von Willebrand disease

Von Willebrand disease (VWD) is a common inherited condition that can sometimes cause heavy bleeding.

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 it 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:

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

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:

Go to your nearest accident and emergency (A&E) 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.

There are three main medicines that can help stop bleeds:

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.

If your doctor recommends medication, talk to them about the best option for you and ask about the side effects of each medicine.

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.

These include:

Read more about treatments for heavy periods.

General advice

If you have VWD, it's a good idea to:

Types of von Willebrand disease

There are several types of VWD.

The main types are:

These three types are all inherited – read about how VWD is 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.

The chances of inheriting type 1 VWD can also be affected by other things, including blood group – people with blood group O are more often affected than people with blood group A or B.

This means it's not always easy to predict whether a child might inherit it from their parents.

Parents who are carriers of a faulty VWF gene may not have symptoms themselves.

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.

Pregnancy and von Willebrand disease

You can have children if you have VWD, even if it's severe, although there is a risk of:

Speak to your specialist about your options if you're planning a pregnancy. Sometimes they may suggest genetic testing to see if your baby is at risk of being born with VWD.

You can also have tests towards the end of your pregnancy to check the level of von Willebrand factor in your blood. Medicine to help prevent bleeding during labour will be offered if your level is low.

You'll probably be advised to give birth in a specialist hospital in case there are any problems. Most women can give birth either vaginally or by caesarean section. It's rare for babies with VWD to have any problems with bleeding during birth.

Information about you

If you have VWD, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases 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.

Find out more about the register.