Most of the literature about hemophilia has been from a medical perspective and about men. This project, which began in 1996, has been to document the lives and \'voices\' of women who have a bleeding disorder, their experiences with the medical community, and the course of their diagnosis and treatment. Respondents were obtained through snowball sampling and were predominantly Caucasian (92%), currently married (66.7%), had (68.9%), and of those women who had children, the majority of their children (67.9%), both boys and girls, as well as other family members (63.3%) had some type of bleeding disorder. Findings revealed there was on average, almost a 15 year gap between the first bleeding episode and the diagnosis of a bleeding disorder. Women reported long, heavy menstrual cycles and having consulted a physician for menstrual bleeding as teenagers. Treatments for menstrual bleeding included D and C\'s (42.9%) and hysterectomies (34.5%). Furthermore, women reported sexual complications during intercourse (51.6%) which involved pain (27.9%)bleeding/bruising (23.0%), ripping (3.3%), pain and bleeding (26.2%), and/or all of the above (19.7%). The author stresses the importance of this aspect of women’s lives and the need for physicians to understand the complications specific to women.
Conflict of Interest: None disclosed
Financial Support/Funding: Zlb Behring
Sydney, Australia, April 2007
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