Because symptoms can be mild, VWD can be difficult to diagnose and often goes undetected. Most GPs will not have met anyone with VWD so getting a diagnosis can take persistence and repeated visits. Your diagnosis will usually take place in a Haemophilia Comprehensive Care Centre or Haemophilia Treatment Centre where you will see a doctor specialising in bleeding disorders or a specialist nurse.
People with type 1 and type 2 VWD may not have day to day bleeding problems. This means it is quite common for people not to be diagnosed until they have heavy bleeding after surgery, dental treatment or injury. For women, giving birth may be the first time that VWD is suspected.
Type 3 VWD can cause major bleeding problems in babies and children. This means people with type 3 VWD are usually diagnosed during their childhood.
Medical history – when you attend your haemophilia centre, your doctor or nurse specialist will ask you questions about your personal and medical history, and your family’s medical history of abnormal bruising and bleeding. This helps your medical team understand how your VWD affects you and can be helpful in diagnosing you correctly.
Blood tests – no single test can diagnose VWD. Diagnostic testing to confirm VWD may have to be repeated because levels of VWF fluctuate and having these tests more than once to confirm or exclude a diagnosis is vital. Anxiety, exercise, pregnancy, illness and stress can also have an effect, so it is not unusual to get slightly different results each time.
Your medical team will need to collect a blood sample, which they will send to a laboratory for testing. Due to the specialised nature of these tests, it may take up to two or three weeks to get your results.
More information is available in our Understanding von Willebrand Disease booklet.