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First Person: John

First Person: John

January 2006

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Let's make this as personal as you can. Can you talk about when you first found out you had lipoatrophy, what your feelings were, and how you noticed and diagnosed it. Being a doctor probably gives you an added perspective on what was going on.

I can pretty much pinpoint when things started, because it was pretty abrupt. My first treatment was AZT [zidovudine, Retrovir] and ddC [zalcitabine, Hivid] in a clinical trial back in 1993, and everything went fine with that, except that all my counts kept falling, and I had some real toxicity problems with ddC. At some point, it was very clear that this combination was not working for me.

I went on d4T [stavudine, Zerit], and at some point I went on ddI [didanosine, Videx]. Actually, we switched to ddI first, instead of ddC and still had no problems, at least with lipoatrophy.

John 

About John (not his real name)

Sometime in the spring of 1995, my counts began falling again, and I went on d4T with ddI. The d4T dose that I was taking is about double what is currently given. I had a really good virologic response with this combination, though; my T cells rose from about 70 to about 200, which was great.

But very quickly, I began to see changes, first in my body, where at first I was happy about it. Because you just sort of lean down. I got really cut, and that was good. But when I first really noticed it was I think in -- I'm trying to figure out -- because I had my picture taken with the governor of Florida, Lawton Chiles, and I think it was in the fall of 1997. I have to look [at] what year he died in, but it was only a few months before he died. And I had my picture taken with him, and I was just horrified, because I thought -- actually it had to be 1998 -- I thought he looked younger than me. He was a really nice man, around 67 years old. That was almost three decades older than me, so I was not happy about that. That picture kind of really made me realize what had been going on.

I then had to have pictures taken for an ID [identification] photo in one of those "takes four pictures for, you know, however many quarters" in a train station. When I got back those pictures, they just really horrified me. I almost really didn't want to go back outside anymore. This was, of course, in the early days, when people were first seeing this.

A little later, I was having lunch with my uncle, and he looked up and asked me if I was "sick." That was the first time I realized other people were seeing it, too.

I was living in Miami Beach at the time, which obviously has a big HIV community, and I began seeing it in other people. For the first time, other than people that were really, really sick, walking around with IV [intravenous] poles a few years before, I could look at and tell who had at least that complication of HIV disease, and [I] realized that people could look at me the same way. I felt really exposed in a way that I hadn't before.

People will tell you, "Oh, you don't look bad." But you know you don't look like yourself. I think that was kind of like the strangest thing -- was to look in the mirror and see someone who didn't look like me. I think, also, the fact that I looked like a much older version of me did not make me happy.

So, for a while, you just kind of had to live with it. I did things like change the way I dressed a bit, to try and hide some of the veininess. I grew facial hair for a while. Unfortunately, on me, facial hair has never been a strong suit. My beard is not thick, and was already showing grey in my teens. I was really glad I wasn't like coming out in the '70s or '80s. Facial hair partially, but not really very completely, covered a little bit of the problem.

Over what period of time? Was it a matter of months, or a matter of years?

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I would say it was actually, it was certainly, less than a year. It was late 1997 when I really noticed it, because I can time this to Governor Bush's election. Because this picture of me with the governor was taken shortly before Governor Bush took over for him. So I would say over -- that would have been January '98 -- so somewhere over '97. It was over '96 and '97. In '96, in the spring, I remember a picture taken -- I can pin this down a little better -- a picture taken where I was on the d4T and ddI and my cheeks had kind of blown up. It was before I got atrophy; I got really big enlargement of my parotid glands, like some people get. That really looked freaky. Then, the summer of 1996, I started -- that's when the Vancouver [International AIDS] conference was -- and I went on protease inhibitors. So I'd say it was like over the year of 1997 that the changes really became marked. Yes, 1997, I would say, the really drastic changes. I would say it took -- it didn't come on, like, immediately -- but I would say, over four to six months, it started becoming apparent. Within a year of being on the highly active antiretroviral therapy, it was very obvious.

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