by Diane Kholos Wysocki, Ph.D.
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
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
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,
Foundation, N. H.
What is Hemophilia? , 1996.
Foundation, N. H. Women With Bleeding Disorders. Community Alert. NY, 8,
Gilbert, M. S. and Wiedel, J. D. The Treatment of Hemophilia:
Current Orthopedic Management. New York, The National Hemophilia
Kasper, C. K. Hereditary Plasma Clotting Factor Disorders and their
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
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,