vWD can be difficult to diagnose and may require a couple of tests to be sure. Type 3 vWD can cause major bleeding problems very early, it is mostly diagnosed, early as infants or children, and quickly. Some people with type 2 may have bleeding and bruising which are seen at a younger age and can be diagnosed early on in life, due to things like intramuscular injections used in vaccinations.
People with Low VWF or type 1 vWD may not have day to day bleeding problems and as a result, may not be diagnosed until they have severe bleeding after surgery, dental procedures or injury.
Your doctor will ask questions about your medical history and your family’s medical history such as:
- Have you had any bruising as result of a little or no injury; especially if you could feel a lump under the bruise?
- Have you had any nosebleeds that happened for no reason; especially ones
that were very heavy or lasted for more than 10 minutes despite pressure on the nose; or any nosebleeds that needed medical attention?
- Have you had any bleeding from a small wound that lasted more than 15 minutes?
- Have you had any prolonged, heavy or repeated bleeding that required medical care after surgery or dental procedures, such as extractions?
- Have you used any medicines that might cause bleeding or increase the amount of bleeding; like non-steroidal anti-inflammatory drugs (NSAID’s-some examples e.g. Aspirin, Brufen, Nurofen, and Ponstan).
- Have you had heavy or prolonged menstrual bleeding; maybe ones where you have seen large clots?
- Have you had heavy bleeding or prolonged bleeding after childbirth?
Your doctor may do a physical exam to look for unusual bruising or recent bleeding.
While testing has improved in recent years, no single test can diagnose vWD. Specialised blood tests, usually performed only in specialised Haemophilia / Inherited Bleeding disorder treatment centres are required. Blood tests may include:
- Tests of how much VWF is in your blood (Von Willebrand Factor Antigen)
- Tests of how well your VWF is working such as GpIb tests, Collagen binding activity and a von Willebrand Factor Ristocetin Cofactor activity.
- Factor VIII level. This is checked with VWF since Factor VIII level may also be low.
- vWF levels can be affected by stress, illness, and hormones, so you may need to have these tests more than once to confirm or exclude a diagnosis. It can be useful to know your vWF and FVIII levels, as it will help you find the information that is most suitable to you