What About The Women?

What About The Women?

Being Alive Newsletter, Being Alive/Los Angeles - June 1992
Dawn R.

How much does the medical community really know about the effects of HIV on women? I am a heterosexual HIV+ symptomatic woman who has been HIV+ for twelve years and, although I live with the usual naggings of HIV (herpes, night sweats, low grade fevers, skin problems, gynecological problems, etc.), they have all seemed manageable until now...

In late February I got really sick. A strange mononucleosis like illness that seemed to hit me overnight had me bedridden for eleven weeks and it's still not over. At first, my husband would have to walk me to the bathroom because I was so absolutely wiped out. I was hospitalized twice and was given every test in the book: bone marrow biopsies, MRI, CT, you name it. All were negative.

My condition was deteriorating and I was intensely frustrated, as were my doctors. How could one be so sick and have rave reviews on their lab tests? Even my T-cells and percentage were in a decent place. What did I have? My hair fell out quite a bit, (you know, girls, this is not something that vanity enjoys) and I was put on EPO.

Within the last two weeks I feel a positive progression, like I can join the living again, although it will probably be another month or two before all of my strength is back. And I may never be able to go back to work.

I have since spoken to three other women that had this same thing happen to them. Coincidence? I think not! Is it possible that this is a mystery manifestation of HIV in women that there isn't even a test for yet? Maybe. The scary part is that they just don't know what this virus is doing to our systems. Where are the clinical trials looking at exactly what is going on in our bodies? We desperately need to get a hold of this situation, or else there may be more mystery illnesses for us in the future. I hope not, but deep inside, I have an uneasy feeling.
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