ROW-B8: Bleeding Disorders Awareness Week

This week is national Bleeding Disorders Awareness Week, previously haemophilia awareness week. This year is really exciting because it is the first time the haemophilia foundation of Australia have recognised all Bleeding Disorders. Surprisingly, vWD is actually more common than haemophilia, because there are more instances of the mild form, where haemophilia is more common in its more severe forms, which do not occur as frequently across the general public. 

In the past haemophilia was a disorder believed only to affect men. It's a common misconception that vWD must then only affect women, however it affects both men and women equally. As awareness for other types of bleeding disorders increases, so do the recorded instances of haemophilia in women. While this is rare, it is most definitely not impossible. Recognising all bleeding disorders in awareness campaigns is greatly important in realigning this school of thought, and more and more women are receiving the adequate treatment they need.

I consider myself very lucky that I am affected by vWD rather than haemophilia. Even though vWD affects me in a similar way that a patient with severe haemophilia is affected, at the time of diagnosis it was still very much thought that haemophilia could not affect girls and I may not have received the level of care that I did in my younger years. The idea that haemophilia doesn’t occur in women is so ingrained, that some researchers may try to imagine all other explanations for instances of bleeding. 

This year, the world haemophilia foundation's theme for bleeding disorders awareness month was 'hear their voices' as we work together as a community to continue to remove the stigma, more women globally are coming forward with severe bleeding symptoms. Dr Paula James, a Professor in Pathology, Molecular Medicine, and Paediatrics is a leading advocate for women with bleeding disorders as has developed a questionnaire designed for women wishing to establish if their blood loss is ‘normal’ during their period. Through her work, more women are seeking treatment and eventually obtaining proper diagnosis, which of course raises overall awareness of bleeding disorders.

Advocating for health among people with bleeding disorders is something many people in the community are passionate about. Bleeding disorders are rare, and in order to ensure future generations receive adequate care it is integral that we support each other and continue shouting from the roof tops during bleeding disorders awareness week!