The equitable diagnosis and treatment of women with bleeding disorders has been an issue for centuries. Women have been underrecognized and underdiagnosed, and those who are diagnosed often experience delays in diagnosis. Historically, research
(1) focused on men and hemophilia, despite the fact that von Willebrand disease has long been recognized as affecting women and is more common than hemophilia. Fewer resources are devoted to its study. Stigma over menstrual bleeding and a lack of knowledge and comfort discussing menstruation in patients and healthcare providers may compound the issue, as heavy (1) menstrual bleeding is one of the most common symptoms. Progress has been made, with many organizations dedicating resources to improving the care of these women. The road is long, and much more work is needed to ensure that women with bleeding disorders receive the care they deserve.
The first mention of hemophilia in 1820 said “hemophilia is transmitted entirely by unaffected females to their sons”— this failed to mention that transmission continued from those sons to their daughters. Another publication in 1886 said, “It may be said that the females hand down the disease while the males are the victims of it.” This seemed to place the responsibility on females. But male sons of carriers have a 50% chance of being affected versus 100% of the daughters of affected men.
1923: The earliest case in the literature of a woman with hemophilia was in 1923 and it described a woman diagnosed in middle age. At the age of 10, she was found unconscious following a tooth extraction and required a 3‐week hospitalization and had multiple subsequent hemorrhagic episodes, yet went undiagnose until middle age.
1959: Mary M. Gooley, RN, assembled one of the first comprehensive care centers in Rochester, New York, which became a model for hemophilia treatment centers (HTC).
1968: The first acknowledgement as girls with hemophilia. But women, people of color and those living in rural areas are still rarely mentioned in media descriptions of people with bleeding disorders.
1973: A new test emerged to learn whether women carried the hemophilia gene, building on established test developed in the 1950s.
1980s: The first rap session for women is held at the annual meeting of National Hemophilia Foundation’s (now National Bleeding Disorders Foundation) and NHF establishes a women’s network. The Center for Disease Control and Prevention (CDC) and Maternal and Child Health Bureau (MCHB) included women with hemophilia in their services.
1990: First woman with a bleeding disorder (vWD) serves on the board of NHF.
1994: Hemophilia Federation of America is founded, and will later expand on education about women with bleeding disorders with the community.
1995: The Center for Disease Control and Prevention (CDC) funds hemophilia treatment centers (HTCs) and NHF expands services to include women. By the late 1990s, several organizations begin developing committees to address the expanding needs of women.
2002: A CDC report from a survey of gynecologists perceives the prevalence of bleeding disorders in women with heavy menstrual bleeding (HMB) to be less than 1%.
2004: A CDC report of women with vWD shows average age symptoms first appear to be 6 years old with the average age of diagnosis to be 16 years old, a 10-year difference between symptoms and diagnosis. Only 17% of patients who reported heavy menstrual bleeding to their OB/GYN were referred to hematology.
2010: The number of females seen by HTCs up 346%. That year The Foundation for Women and Girls with Blood Disorders founded.
2013: Continued improvements in and expansion of research, education, and conversation about von Willebrand Disease and women with bleeding disorders occurs.
2015: HFA’s Blood Sisterhood mobile app is launched.
2019: Despite demand for more attention, disparities in the diagnosis and treatment of women with bleeding disorders and those with rare bleeding disorders continues. MASAC, ASH, NIH, the Foundation for Women and Girls with Blood Disorders and other organizations begin publishing research and guidelines geared toward women.
2019: HFA is awarded a PCORI grant to engage women in research.
2022: The U.S. Supreme Court overturns the long-standing Roe vs. Wade, which protected a woman’s right to an abortion. With fear of legal action based on health records, women shared concerns about the privacy of using mobile apps to track menstrual bleeding. HFA chose to sunset its Blood Sisterhood mobile app, which was used to track bleeding symptoms in women with bleeding disorders. HFA created menstruation education on its website, including downloadable tracking pages. HFA also publishes “Females in Research Sharing and Translation (FIRST) Project with the bleeding disorders community.
2024: MASAC issues a document providing recommendations for the diagnosis and treatment of inherited bleeding disorders in girls and women, showing a major step toward greater recognition of the treatment of females.
(1) Sources include CDC, NIH, Research and Practice in Thrombosis and Haemostasis, NBDF, Hemophilia Alliance, Canadian Hemophilia Foundation and the Foundation for Women and Girls with Bleeding Disorders.
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