About VWD
What is VWD?
If you have Von Willebrand disease (VWD) you are not alone, VWD is the most common inherited bleeding disorder. Around one in every 100 people has VWD, which adds up to many millions worldwide. Inherited bleeding disorders vary in cause and severity, but they all share one thing in common: blood is unable to clot normally so takes longer than usual to stop.
What is VWF?
People with VWD either have Von Willebrand Factor (VWF) that doesn’t work as well as it should or they have too little. VWF is an essential component for blood clotting and is found in the blood and stored within the blood vessels. Its job is to help form a clot and prevent blood loss.
Normally, VWF acts like a glue to help small blood cells called platelets stick together to form a clot. Additionally, VWF stops a special clotting called Factor VIII (FVIII) from being removed from the blood. If you have less VWF you may also have less FVIII.
How do people get VWD?
VWD is usually inherited – that is, passed down from one or both parents through their genes. Genes are like a biological instruction manual that tells cells in the body how to develop (e.g. what hair and eye colour a person will have).
If only one parent passes a faulty VWF gene to their child, the child can inherit mild or medium severity VWD. However, if both parents pass on a faulty VWF gene, they are more likely to inherit a severe type of VWD. Unlike some other bleeding disorders, such as haemophilia, VWD affects both males and females.
VWD can also occur when a faulty VWF gene develops in a fertilised egg in the womb. This is called a genetic mutation. The baby's parents do not carry this defective gene, so their other children would not inherit it. It is impossible to 'catch' VWD of any type so it can never be passed on like a cold or the flu.
Acquired VWD
In extremely rare cases, VWD can occur as a result of other medical conditions, such as lupus, heart disease and some cancers.
What types of VWD are there?
There are three main types of VWD:
| Type 1 VWD |
|---|
| People with type 1 VWD have low levels of VWF. They may also have low levels of FVIII, which is another substance involved in blood clotting. Around 60-80% of people with VWD have type 1, making it the most common form of the condition. |
| Type 2 VWD |
|---|
| In type 2 VWD, VWF does not work as well as it should, while the amount of VWF in the blood may be low or normal. There are four main subtypes of type 2 VWD: 2A, 2B, 2M and 2N. Each relates to a specific blood clotting problem involving VWF. Around 10-30% of people with VWD have type 2. |
| Type 3 VWD |
|---|
| People with type 3 VWD have very low levels of VWF or none at all, in their blood. They may also have low levels of FVIII. Type 3 is the most serious form of VWD, but it is very rare, affecting around 1-5% of people with VWD. |
In later life acquired VWD can result from other medical conditions such as heart disease and some cancers, but this is extremely rare. Your doctor will be able to tell you which type of VWD you have.
What are the symptoms of VWD?
The symptoms of VWD can vary widely, even among people in the same family. Some of the characteristic bleeding symptoms include:
- Frequent hard-to-stop nose bleeds
- Frequent large bruises from minor bumps or falls
- Bleeding for longer than usual after injuries, surgery or dental procedures
- Bleeding from the gums
- Heavy or prolonged periods
- Bleeding into joints and soft tissues
People with type 1 and type 2 VWD may have only mild symptoms, or none at all unless they have surgery or major injury. Symptoms can be more severe in people with type 2 VWD, but are not as severe as those seen in type 3 VWD.
In severe VWD (type 3) symptoms can also include bleeding into joints and muscles, causing pain and swelling. This may occur spontaneously, with no obvious external cause.
Reporting of side effects
If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at https://yellowcard.mhra.gov.uk.
By reporting side effects you can help provide more information on the safety of this medicine.