Von Willebrand disease Matenga von Willebrand

Von Willebrand disease is a condition that affects your blood's ability to clot. It means you have low or poor quality von Willebrand factor in your blood. This is needed to stick platelets together to help stop bleeding. Von Willebrand disease is passed on from one of your parents.


Symptoms of von Willebrand disease

The symptoms of von Willebrand disease can range from very mild and barely noticeable to frequent and severe. Sometimes there will not be any signs of it until after you have had minor surgery, where the surgeon notices heavier or long-lasting bleeding.

The main symptoms are:

  • frequent nosebleeds
  • bruising easily
  • heavy or long-lasting bleeding from cuts or surgery
  • heavy periods for women.

Complications of von Willebrand disease

Heavy bleeding caused by von Willebrand disease may cause iron deficiency anaemia. It can also lead to serious outcomes caused by loss of blood.

Some people have painful bleeding into muscles and joints. This is known as internal bleeding and can cause severe pain and swelling.


Diagnosing von Willebrand disease

If your healthcare provider thinks you may have a bleeding problem, they will refer you to a specialist (a haematologist). They can do tests for disorders like von Willebrand disease, such as checking how long you bleed before your blood clots.

They will want to know about your personal and family medical history, especially if anyone else in your family has a bleeding disorder.


Treating von Willebrand disease

If you have a mild form of von Willebrand disease, you will not usually need special medicines unless you have:

  • surgery
  • dental work
  • an accident
  • an injury.

If you have a minor bleeding problem like bruising, protect the area from further injury. You can help reduce the symptoms — if it is a leg, foot, hand or arm — by raising the limb and using rest, ice and compression.

Soft tissue injuries and treatment

Medications

If you have more serious bleeding your healthcare provider may recommend medications. You may be referred to see a specialist doctor (haematologist) to discuss the medication options.

Some medications reduce the amount of bleeding by increasing the ability of your blood to clot. Other medications work by helping to keep the clot in place.

You might also discuss treatment to replace the missing von Willebrand factor. This is done using donated plasma, a part of the blood separated out from donated blood.


Self care for von Willebrand disease

If you have von Willebrand disease, it is important to tell healthcare providers you have it before:

  • surgery
  • dental work
  • immunisations.

You may need to take medicines to reduce your risk of bleeding before and afterwards.

You should also:

  • avoid aspirin and anti-inflammatory drugs like ibuprofen unless your healthcare provider tells you it is safe to use them — these can make bleeding worse
  • ask your healthcare provider if there are any activities you need to avoid — you should be able to take part in most sports and activities.