The Challenges of Being a
Woman with a "Male Disease"

For someone who has hemophilia and HIV/AIDS, life can be a challenge. However, if that person happens to be a woman with a bleeding disorder and HIV/AIDS, life becomes an even greater challenge. To begin with, women are not supposed to have a bleeding disorder; at least that is what many people, including some in the medical community, commonly believe. The medical literature rarely admits that women can be affected with any kind of bleeding disorder and as a result, the incidence of women who have bleeding disorders is unclear. Most times, women are undiagnosed or misdiagnosed, even though they present themselves to their physicians with such srymptoms as easy bruising and menorrhagia (abnormal menstrual bleeding). In many instances these symptoms are treated as hormonal problems that often result in excessive surgeries such as D & C's and hysterectomies, rather than a correct diagnosis of a bleeding disorder.

Bleeding Disorders 101

While it is rare for women to have either Hemophilia A (factor VIII deficiency) or Hemophilia B (factor IX deficiency), which are both sex-linked disorders, women can be symptomatic carriers and have bleeding episodes that are just as severe as those with "true" hemophilia. The most common cause of bleeding in females in not hemophilia, but a bleeding disorder described by Dr. Erik von Willebrand in 1925 of a young female who had extensive bleeding during childhood. Von Willebrand's Disease (vWD) is estimated to affect 1 out of every 100 Americans. The symptoms of vWD include bruising, bleeding from mucus membranes such as the mouth, nose, gastrointestinal tract and uterus, and bleeding after surgery or dental work. Usually an inherited bleeding disorder, vWD is passed from one generation to the next, and can be a mutation in the gene that produces vWD or acquired later on in life. Similarly, women can have other bleeding disorders that are more rare, but vary in severity and affect women and men equally.

Current Research

Because I am a woman with vWD as well as a sociologist trained in research, I had a strong desire to combine my personal medical experience with my professional ability. It didn't take long to discover that much of the literature about hemophilia is: (1) from the medical community; (2) about treatment and diagnosis; (3) about other diseases, such as HIV and hepatitis; and (4) about the needs of men. Women have been virtually left out. Because of this, my project 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. During the course of my research I've found that the needs for women with bleeding disorders are indisputable. They will no longer be silenced and want their stories to be heard.

Women with bleeding disorders have histories of horrendous emergency room and doctor visits, where the medical staff knows little, if anything, about their conditions and the treatment they should receive. The time between their first bleeding episode and the diagnosis of the bleeding disorder can take many years. While the majority of treatments for hemophilia and other bleeding disorders are relatively safe now, the women interviewed in my study often complained about being given treatments that placed them at risk for other diseases.

Out of the original group of women in my study, a few said they are HIV-positive as a direct result of the blood products they received for their bleeding disorders. I have been given the names of other women who have been infected as a result of their bleeding disorder, but unfortuantely these women cannot be interviewed. Their voices will never be heard again. But the small group of women I have interviewed revealed they are very much isolated from the larger HIV/AIDS support systems, as well as from other women with a bleeding disorder and HIV/AIDS. Their doctors often didn't think they would even be at risk for becoming infected and they sometimes had to demand to be tested after being sick for many years. Most of the information they uncovered [see below] was the result of their own research.

Aylesworth, C. A., R. C. Smallridge, et al. Acquired von Willebrand's Disease: A Rare Manifestation of Postpartum Thyroiditis. American Journal of Hematology 50: 217-219, 1995.

Bell, A. Wrongful Charges: The Bruises So Common With Bleeding Disorders Can Raise Ugly Suspicions of Abuse. Hemalog (Issue): 10-13, (1996).

Brenner, P. F., C. J. Chuong, et al. Women with Bleeding Disorders: The Role of the OB/GYN. Hemophilia, Boston, Armour, 1994.

Centeon, A Family Guide to Hemophilia, B. Kankakee, 1996.

Ewenstein, B. von Willbrands Disease: Types & Treatments. Summer: 10-11, 16, 1995.

Foundation, N. H. Statistics of Hemophilia in the United States, 1994.

Foundation, N. H. What is Hemophilia? , 1996.

Foundation, N. H. Women With Bleeding Disorders. Community Alert. NY, 8, 1997.

Gilbert, M. S. and Wiedel, J. D. The Treatment of Hemophilia: Current Orthopedic Management. New York, The National Hemophilia Foundation, 1996.

Kasper, C. K. Hereditary Plasma Clotting Factor Disorders and their Management. The Treatment of Hemophilia. Los Angeles, Orthopaedic Hospital, 1996.

Marble, M. Undiagnosed Bleeding Disorder Poses Significant Risk to Women. Women's Health Weekly (May 22): 12-14, 1995.

Miller, C. Inheritance of Hemophilia. New York, National Hemophilia Foundation, 1992.

Montgomery, P. & Hilgartner, M. Understanding von Willebrand Disease. The National Hemophilia Foundation: New York, 1991.

Reed, B. D. Postpartum Hemorrhage. American Family Physician 37(3):111-120, 1988.