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AIDS Watch: Books and Their Covers

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With HIV, what you see is not necessarily what you get.
KellyMcCann_WPTN
Kelly McCann

By Kelly McCann

‘HIV is still a big deal’: Groundbreaking online video series
By Eric Roland 

I recently celebrated my 47th birthday. I had fun with friends, enjoyed some cake and adult beverages, and received some wonderful gifts. One such gift, which I gave myself, will be particularly helpful to me in the years to come. It was the gift of acceptance of my ever-increasing age. I’m fine with the gray hairs popping up amongst the brown ones, the laugh lines and crow’s feet appearing on my face, and the thickening of my mid-section. I’m even OK with the thought of reaching the mid-century mark in a few short years.  

I think, in part, the reason for my Zen attitude about growing older is that I know how I look on the outside does not necessarily convey who I am on the inside. Looking at me, you might think I am a mild-mannered and conservative middle-aged professional woman. Au contraire! Look a little closer, beyond the façade, and you’ll be able to identify the person I really am (and have been since my youth): a head-bangin’, socially radical, smart-assed, adventurous, and fearless warrior chick!

The idea is nothing new. We’ve heard for years the old dictum, “You can’t judge a book by its cover.” But the concept led me to think about persons living with HIV.   

In the early days of HIV, many people with the disease suffered from wasting syndrome (extreme weight and muscle loss), Kaposi’s sarcoma (a skin cancer that can cause visible purple lesions on the skin), or other conditions that largely telegraphed their HIV status. Today, thanks to improved medications and better treatments, persons living with HIV/AIDS do not necessarily develop obvious AIDS-related symptoms.

However, we must acknowledge that certain highly active anti-retroviral medications (HIV meds) can lead to lipodystrophy, or changes in the way fat is stored and distributed in the body. In some persons, the medications can cause lipohypertrophy, a condition in which there is an unwanted accumulation of fat cells, often occurring in the belly or in the area between the shoulder blades, below the neck.  

In other cases, persons may suffer from lipoatrophy, or the loss of subcutaneous fat in the face, arms and legs, and buttocks. This can lead to the appearance of hollow eyes and sunken cheeks, ropy veins in the extremities, and a flattening of the butt.

Many people being treated for HIV have concerns about these lipodystrophic conditions making their status obvious. However, they should know that most members of our society have no idea about lipodystrophy and its association with HIV treatment. Nevertheless, lipohypertrophy and lipoatrophy do constitute serious concerns for many patients.

It is a goal of pharmaceutical companies and medical providers for people living with HIV/AIDS to both feel and look as good as they can. So, if you are taking HIV medications and you notice bodily changes that concern you, please address them with your doctor on your next visit. Your doctor may change your medication regimen to lessen the likelihood of lipodystrophy, or she may tell you about other treatments and cosmetic procedures that can undo the undesirable side effects of your medications.

But I digress. Let’s get back to the topic of our inability to judge one’s HIV status based upon physical appearance.

As you well know, someone can be infected with HIV for many years and not know it, because it can take years for symptoms to present themselves. However, the infected person can transmit the virus to their sexual and needle-sharing partners even when they appear healthy and feel fine. That is why it is important to know your HIV status and the status of your partner, because you can’t tell by looking.

There is a new website and viral online game you need to check out. Pos or Not (www.posornot.com) was developed by mtvU and the Kaiser Family Foundation, in partnership with POZ magazine. The game confronts HIV myths and stereotypes as it poses the question, “Think You Can Tell If I Have HIV?” Players are asked to determine a person’s HIV status (positive or negative) based only upon their photographs and a small amount of personal information.  

The game can be very educational, especially for young people or those just learning about HIV/AIDS, and it may help to reduce the stigma associated with the disease. However, the website offers much, much more. Basic HIV/AIDS facts are available, along with tips for having a discussion about HIV and/or safer sex with your partner. Moreover, there is HIV-testing information on the site, including a mechanism to help you locate testing facilities nearest your home or office, based upon zip code.

So, while you are exploring the Pos or Not website, find out where you can go to get an HIV test.

Then follow through. June 27 is National HIV Testing Day; get tested and get the results.

Kelly A. McCann is the chief executive officer of AIDS Foundation Houston. For testing information, call AFH’s Prevention Services Department at 713/623-6796 or log on to www.aidshelp.org.

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