VWD is NOT like haemophilia

Written by Sam Wilson, January 31, 2025

People with von Willebrand disorder (VWD) often compare it to haemophilia to try to help others understand the condition, but it’s time to give VWD the recognition it deserves. 

Although VWD was identified 101 years ago and is more common than haemophilia, most people, including some clinicians, have never heard of the genetic bleeding disorder.  

As we mark VWD Day on 1 February, we’re focussing on the 12,414 men, women and children in the UK who have VWD, and the many thousands more who have not yet received a diagnosis.  

Although there are similarities between haemophilia and VWD, there are also some significant differences, such as it affecting men and women equally and being passed down by men as well as women. VWD is thought to affect 1% of the world’s population, meaning it is seriously under diagnosed in the UK, as well as around the world.  

Christine Simpson, 59, has VWD, as does her daughter Ria. The pair have spent many years working to raise awareness about the reality of the condition.  

Christine said: ‘People living with VWD are often dealing with difficult symptoms, such as prolonged nosebleeds, very heavy periods and mouth bleeds that feel like they’ll never end. Coping with the physical symptoms can be extremely difficult which involves taking time off from school or the work place. This can have a huge impact.’ 

She highlights how young men and women might struggle with low self-esteem due to having bad breath as a result of mouth bleeds or a restricted social life because of very heavy periods. People with VWD may feel self-conscious about bruising easily, wondering if colleagues or friends are speculating about how they were caused. 

Christine said: ‘We need more support for people with VWD. It’s not just about diagnosis, it’s about getting the right support after that and understanding that your symptoms are not normal, even if it’s what you’ve experienced your whole life. Don’t make it the norm. 

She remembers a cleaner asking if she was the patient with the ‘funny’ condition when she was in hospital after giving birth to her son. Another time, she received an apology from a paramedic who was dismissive because she didn’t understand VWD. Christine says she often meets medical professionals who are unaware of what her condition means or how to deal with it, although many are helpful and keen to find out more about it.  

As Christine has got older, she’s unexpectedly had upper gastrointestinal bleeding and believes that everyone with VWD should be made more aware of all the possible symptoms of the condition.  

She said: ‘For me, it was about surviving and getting on with supporting my children, but I’d encourage people to seek out the right treatment and insist on seeing a specialist. Don’t let it disrupt your life.’ 

Join our VWD Working Group 

We’re looking for men and women with VWD to join our VWD Working Group which helps shape the Haemophilia Society’s work in support of people with this condition. We’re looking for people who can share their ideas and experiences in a friendly and supportive environment. You can contribute as much or as little as you like, but you do need to commit to attending quarterly meetings and to bringing your voice to the table.  

Find out more about VWD 

There’s lots of information about VWD on our website: https://haemophilia.org.uk/bleeding-disorders/von-willebrand-disease/. 

One in five women who seek medical help with heavy periods have an underlying bleeding disorder that can be managed. Follow the link to find our symptom checker which will give guidance and empower you with information so that if you do go on to visit your GP, you should receive the right treatment. https://haemophilia.org.uk/support/talking-red/checkyoursymptoms/ 

To join the VWD Working Group or contact us email [email protected]