Exposing Women's Experiences with Von Willebrand Disease: A Case Study of Online Support Groups

This research explores the unique and complicated experiences of women living with Von Willebrand Disease (VWD). VWD occurs with quantitative or qualitative deficiencies in Von Willebrand Factor—a key protein involved in blood clotting. While VWD affects men and women, women often suffer harsher complications because of menstruation, childbirth, and other women’s health issues. Using online VWD support groups, this research recognizes and attempts to understand the common experiences of women with VWD. Availability of Care, Motherhood, Community and Sisterhood, Girlhood, Sexual Health and Reproductive Health, and Stigma were the six common themes found within these online support groups. Women in these groups corroborate the current understandings of women-specific experiences with VWD: particularly, heavy menstruation, postpartum hemorrhaging, diagnostic difficulties, treatment complications, and implications of an overall lower quality of life. However, these women also report VWD-induced complications with sexual health, mental health, care when trying to conceive, misinterpretations of bruising, constraints on healthcare availability, and the stigma associated with heavy menstruation. These findings address gaps in the literature and identify new areas for further research. Ideally, these conclusions will provide educational materials for healthcare professionals, government legislatures, and families to better support women and girls with VWD.
Keywords: Von Willebrand disease, women’s health, sexual health, mental health, reproductive health, phenomenology, and stigma