{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T01:22:07Z","timestamp":1792027327676,"version":"4.4.0"},"reference-count":58,"publisher":"American Society of Hematology","issue":"1","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2022,12,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>Von Willebrand disease (VWD), the most common inherited bleeding disorder (IBD), disproportionately affects females, given the hemostatic challenges they may encounter throughout their lifetimes. Despite this, research about VWD remains grossly underrepresented, particularly compared to hemophilia, which is historically diagnosed in males. Structural sexism, stigmatization of menstrual bleeding, delayed diagnosis, and a lack of timely access to care result in an increased frequency of bleeding events, iron deficiency, iron deficiency anemia, and a decreased quality of life. However, we are only beginning to recognize and acknowledge the magnitude of the burden of this disease. With an increasing number of studies documenting the experiences of women with IBDs and recent international guidelines suggesting changes to optimal management, a paradigm shift in recognition and treatment is taking place. Here, we present a fictional patient case to illustrate one woman's history of bleeding. We review the evidence describing the impact of VWD on quality of life, normalization of vaginal bleeding, diagnostic delays, and the importance of access to multidisciplinary care. Furthermore, we discuss considerations around reproductive decision-making and the intergenerational nature of bleeding, which often renders patients as caregivers. Through incorporating the patient perspective, we argue for an equitable and compassionate path to overcome decades of silence, misrecognition, and dismissal. This path moves toward destigmatization, open dialogue, and timely access to specialized care.<\/jats:p>","DOI":"10.1182\/hematology.2022000391","type":"journal-article","created":{"date-parts":[[2022,12,9]],"date-time":"2022-12-09T16:14:31Z","timestamp":1670602471000},"page":"631-636","update-policy":"https:\/\/doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":21,"title":["What have we learned about the patient's experience of von Willebrand disease? A focus on women"],"prefix":"10.1182","volume":"2022","author":[{"given":"Heather","family":"VanderMeulen","sequence":"first","affiliation":[{"name":"1 Canadian Blood Services, Toronto, Canada"},{"name":"2 Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumedha","family":"Arya","sequence":"additional","affiliation":[{"name":"3 Department of Medicine, University of Toronto, Toronto, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Nersesian","sequence":"additional","affiliation":[{"name":"4 Department of Microbiology and Immunology, Dalhousie University, Halifax, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natalie","family":"Philbert","sequence":"additional","affiliation":[{"name":"5 Department of Women's Services and Programs, Hemophilia Ontario, Toronto, Canada"},{"name":"6 Lyle. S. Hallman Faculty of Social Work, Wilfrid Laurier University, Waterloo, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Sholzberg","sequence":"additional","affiliation":[{"name":"2 Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, Canada"},{"name":"3 Department of Medicine, University of Toronto, Toronto, Canada"},{"name":"7 Department of Medicine, and Department of Laboratory Medicine and Pathobiology, St. Michael's Hospital, Li Ka Shing Knowledge Institute, Toronto, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"234","published-online":{"date-parts":[[2022,12,9]]},"reference":[{"issue":"suppl 1","key":"2022120916103509100_hem2022000391C1","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1111\/j.1355-0691.2004.00874.x","article-title":"Quality of life assessment in haemophilia","volume":"10","author":"Bullinger","year":"2004","journal-title":"Haemophilia"},{"issue":"7","key":"2022120916103509100_hem2022000391C2","doi-asserted-by":"crossref","first-page":"1492","DOI":"10.1111\/j.1538-7836.2010.03864.x","article-title":"Health-related quality of life among adult patients with moderate and severe von Willebrand disease","volume":"8","author":"de Wee","year":"2010","journal-title":"J Thromb Haemost"},{"issue":"1","key":"2022120916103509100_hem2022000391C3","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1111\/hae.13062","article-title":"Relative contributions of bleeding scores and iron status on health-related quality of life in von Willebrand disease: a cross-sectional study","volume":"23","author":"Xu","year":"2017","journal-title":"Haemophilia"},{"issue":"suppl 1","key":"2022120916103509100_hem2022000391C4","doi-asserted-by":"crossref","first-page":"4052","DOI":"10.1182\/blood-2021-151625","article-title":"Depression and anxiety in persons with von Willebrand disease","volume":"138","author":"Roberts","year":"2021","journal-title":"Blood"},{"issue":"3","key":"2022120916103509100_hem2022000391C5","doi-asserted-by":"crossref","first-page":"395","DOI":"10.1111\/hae.13420","article-title":"Male gender, school attendance and sports participation are positively associated with health-related quality of life in children and adolescents with congenital bleeding disorders","volume":"24","author":"Limperg","year":"2018","journal-title":"Haemophilia"},{"issue":"2","key":"2022120916103509100_hem2022000391C6","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1002\/ajh.10327","article-title":"Health status and health-related quality of life associated with von Willebrand disease","volume":"73","author":"Barr","year":"2003","journal-title":"Am J Hematol"},{"issue":"3","key":"2022120916103509100_hem2022000391C7","doi-asserted-by":"crossref","first-page":"385","DOI":"10.1111\/hae.12014","article-title":"Bleeding disorders, menorrhagia and iron deficiency: impacts on health-related quality of life","volume":"19","author":"Rae","year":"2013","journal-title":"Haemophilia"},{"issue":"2","key":"2022120916103509100_hem2022000391C8","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1080\/03630241003705037","article-title":"Questioning our questions: do frequently asked questions adequately cover the aspects of women's lives most affected by abnormal uterine bleeding? 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