Historically, women and girls affected by hemophilia have experienced protracted delays in securing an accurate diagnosis and care that takes bleeding disorders into full account. A newly published paper takes a 200+ year view of this history and provides a better understanding of just how this underserved population has slowly but surely garnered greater visibility and awareness – if not equitable care – over the decades.
The paper, “The History of Women and Hemophilia: A Narrative Review of Evolving Beliefs and Testing Practices,” appears in The Journal of Thrombosis and Haemostasis. The authors conducted a broad and narrative literature review focused on women and hemophilia from 1800 to 2023, including but not limited to case reports, larger studies, and review articles. Papers about the history of hemophilia were also included in their search.
Their findings helped to identify and characterize nine distinct time periods of hemophilia history. These time periods represented fundamental shifts in beliefs and/or testing practices spurred on by scientific breakthroughs in genetics, screening methods, and other technologies. The period encompassed in the review begins in the early 19th century with early descriptions of the possible role of women in disease transmission, then takes the reader through the 20th and into the 21st century – these latter decades saw great leaps in carrier detection techniques and enhanced awareness of the considerable challenges facing affected women and girls. That said, while strides have been made, many women continue to experience significant diagnostic delays, untreated bleeding symptoms, and barriers to appropriate care.
The authors suggest that systemic sexism in bleeding disorders management could be a root cause of these challenges. This factor could explain, at least in part, the persistent and widely held belief that aside from a woman’s carrier status, hemophilia only affects men in a substantive way. It could also explain why some healthcare providers tend to dismiss female-specific symptoms as only heavy menstrual bleeding, without consideration for underlying causes.
“Clear progress has been achieved yet recent publications document many ongoing issues such as delayed diagnosis, untreated symptoms, and barriers to care,” concluded the authors. “We owe these patients continued focus, targeted research with patient partnership, reparative knowledge translation efforts focused on unlearning discriminatory principles and learning equity/social justice focused health care principles, concerted consideration of the female patient’s lived experiences from consideration of her childbearing capacity, and monitoring of progress until the knowledge learned is fully translated into practice with real-world outcomes in screening, diagnosis, treatment, and prevention of bleeding.”
This is a fascinating article, recommended for anyone interested in this important if less understood period of hemophilia history. It could also be a useful resource for advocacy and outreach efforts as it encompasses key context to help explain how far we have come and how much farther we still need to go to ensure that these women receive equitable care.
Read the full open access article here to learn more.
Citation
Chaigneau M, Bowman M, Wilton P, Card R, Poon MC, Lillicrap D, Sholzberg M, James P. The history of women and hemophilia: a narrative review of evolving beliefs and testing practices. J Thromb Haemost. 2025 Mar;23(3):928-936. doi: 10.1016/j.jtha.2024.12.004. Epub 2024 Dec 13. PMID: 39675566.
Disclaimer: NBDF, through its Neil Frick Resource Center, provides periodic synopses of articles published in peer reviewed journals, the purpose of which is to highlight papers that cover a wide range of topics and relate to a broad spectrum of the inherited blood disorders community. Prior summaries have focused on topics such as shared decision making, gene therapy, health equity, and more. NBDF hopes you find this content to be informative and engaging.
Any questions about the articles featured here should be directed to the publishing journal and/or the study authors. This content is for general information only. NBDF does not give medical advice or engage in the practice of medicine. NBDF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or HTC before pursuing any course of treatment.
