Grant: Travel Awards - Institute Community Support

Von Willebrand disease (VWD) is the most common genetic bleeding disorder that affects 1% of the general population. In this condition, patients have a tendency to bleed near skin and mucous membranes; for women, this results in abnormally heavy menstrual periods that are especially concerning. In this study, we set out to evaluate the quality of life among patients living with VWD, by using a self-reported questionnaire. We also collected patients' bleeding symptoms and their demographic information. We found that compared to age- and gender-matched Canadians, patients living with VWD had significantly lower quality of life scores in the mental health domain. Furthermore, we found that severity of bleeding was not related to quality-of-life status. We believe that our findings that VWD patients have markedly lower quality-of-life strengthens the rationale for strategies to improve the detection of this condition, which currently is woefully under-diagnosed.