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Hiv/aids, Cmv Retinitis and Vision Loss

HIV (human immunodeficiency virus) is not well known as a cause of vision loss. Losing part or all of your sight because of HIV is rare nowadays due to medical advances, but at one time there was no effective treatment for this virus or its complications. HIV-related vision loss seems even rarer be cause often those who have become blind in this way are reluctant to reveal the truth- the stigma is still that strong. Some prefer to say they have retinopathy or macular degeneration, rather than the real cause-CMV retinitis, an infection that can result from AIDS (acquired immunodeficiency syndrome).

What is CMV?

CMV stands for Cytomegalovirus. In North America, 50-85% of people over forty years of age are infected with this virus, but a normal immune system is able to keep it at bay. In fact, a person can live a long life without ever knowing they are infected.

In the late 1980s and early 1990s, however, before the development of effective treatments for HIV and its complications, CMV was a major cause of death for people entering the last stage of HIV disease, often called AIDS. It can attack various organs such as the stomach (gastritis), bowel (colitis), central nervous system (AIDS dementia), lungs (pneumonia), or eyes (retinitis).

In 1986, I was diagnosed with HIV and was likely infected in 1984. In 1995, I entered the final stage of the disease (AIDS), when I was diagnosed with CMV gastritis-the virus had started "eating" the insides of my stomach. Doctors put me on intravenous (IV) treatment three times a week for what was considered to be the rest of my life--estimated at that time to be less than two years.

No effective treatment existed for HIV in those days and my condition continued to deteriorate. Two years later, the CMV virus was "chewing" on the retinas of both my eyes. My ophthalmologist told me that if it was not stopped, I would soon go blind.

I started having weekly injections directly into my eyes, something I hated--first the needles to freeze the eyes, then the needles with the medication, and finally the almost irresistible urge to gouge out my own eyes as the freezing wore off. In my case, effective HIV treatments arrived just at the right time. As my immune system slowly recovered thanks to new medications, I no longer needed the eye injections and eventually I was also able to stop having the IV treatments.

It was time to reinvent myself and reinvest in life. I still had my sight but then I started to have some complications with retinal detachments. The "chewing" of the CMV and the "poking" of the needles had left too many little holes in my retinas. They detached, necessitating vitraectomies, where the liquid in the eyes (vitreous) is removed and replaced with silicone oil. (When I give testimonials or public awareness presentations in schools, I like to say that I have silicone eyes--not silicone breasts!)

Over time, this caused cataracts to develop, which required more surgery. In 2002, after five operations, I was told that I was legally blind. The doctors still don't know the precise reason, but suspect that it's simply the result of my eyes having experienced too much trauma.

Given that HIV is manageable today through medication (even though it is not an easy task), do people with this virus still get CMV retinitis?

The quick answer is that fortunately there is much less incidence of CMV retinitis nowadays. But it is still around.

There are two main categories of people with HIV who still develop CMV--those who cannot effectively be treated and those who simply do not know they are infected with HIV. Among the former are people who do not live in conditions favourable to taking medication regularly, including the homeless, some natives, people with mental health issues, and injection drug users. Another group is those having adverse reactions to HIV medication.

Today, if HIV remains untreated or is untreatable, CMV retinitis will usually only occur in the last 6 months of life. Normally when one is infected with HIV, CMV retinitis is not the first debilitating infection to appear, but some people simply have not read the "rule book" and develop CMV retinitis as their first HIV infection. If undetected, the disease can progress in 2 to 3 weeks to the point of total blindness.

Yves Brunet lives in Ottawa, Ontario, and gives testimonials and seminars on HIV at schools, community groups, conferences etc. on a volunteer basis. He was the 2005 winner of the Alliance for Equality of Blind Canadians' Alan H. Neville Memorial Scholarship. Readers with comments or questions can contact him at:

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