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Best face forward

Four people share their experiences with the psychosocial effects of facial lipoatrophy and reconstructive treatment

by Jennifer Tsui

living+ magazine, January/February 2009/ Issue 58

One of the most prominent and challenging side effects associated with HIV is lipoatrophy-a condition that causes erratic fat production of cells and the unequal distribution of fat in the body. Manifestations of lipoatrophy can vary from excessive accumulation of fat around the abdomen to severe fat and muscle wasting in the arms, legs, buttocks, and face

Lipoatrophy is caused by HIV as well as certain classes of antiretroviral medications. These drugs damage or destroy the body's fat cells, resulting in disfigurement. While the condition isn't life-threatening, it can cause various medical problems.

Changing faces, changing lives
Lipoatrophy is often confused with AIDS-related wasting-a sign of advanced HIV disease. Unfortunately, the medication designed specifically to help individuals fight HIV often gives the unwanted impression they're losing the battle. Moreover, the obvious physical disfigurement caused by facial lipoatrophy, in particular, is a source of severe psychological and emotional distress for many people living with the condition.

"There's this sense that everyone knows you're HIV-positive," says Lorne, who was on one of the lipoatrophy- causing antiretroviral medications for eight years.

"I started wearing a hat-which I'd never done before- and I started walking with my head down," says Bradford McIntyre, whose face began rapidly sinking one summer. "I tried to stay incognito, I didn't want people to notice."

Malsah, who suffered from severe lipoatrophy, often chose not to go out in public because he was so selfconscious: "I looked like a walking corpse." He felt that the lipoatrophy advertised his HIV status, and he could feel the judgment in strangers' stares.

Moffatt's drug regimen was not only causing lipoatrophy, drug toxicity was destroying his liver and killing him. When his doctors changed his medication, Moffatt was just grateful to be alive. "I thought: I might look a little weird, but at least I have a heartbeat."

However, not everyone is as grateful. While they're alive and-for the most part- healthy, people with lipoatrophy often feel that they've lost their quality of life and are powerless to change their situation.

"With lipoatrophy, your body's out of your control," says Lorne.

"On the surface, it makes
the fact that you have HIV
less obvious, which is
attractive. But it gives you
a new face and it doesn't
feel natural.
" - Lorne

Getting under the skin
Reconstructive treatments are one way people try to reclaim their bodies and sense of self. These procedures involve a series of polymer gel injections-the most commonly used compounds are marketed under the names Sculptra and Bio-Alcamid-into or beneath the skin to give the impression of a fuller face. Regrettably, these treatments aren't presently subsidized by BC's Medical Services Plan (MSP) or PharmaCare, although BCPWA has been lobbying the provincial government since 2006 to obtain such coverage. And while the treatments are expensive-well over $2,000-for many, the price tag is well worth a life free from stigma, judgment, and self-consciousness.

"The treatment changed my life," says Bradford, who underwent the procedure as a subject in a Bio-Alcamid training session for doctors. "I went from everyone looking at me and thinking I was sick and dying, to everyone thinking I'm the picture of health."

For Malsah, who was also the subject of a Bio-Alcamid demonstration session, the effect was immediate: "It looked way, way better. I didn't look like a corpse or a junkie anymore, and strangers seemed to treat me with more respect."

Moffatt, too, felt that the procedure greatly improved his quality of life and self-esteem. He f irst participated in a clinical study with Radiesse and, when the effects of it began to diminish, he paid $2,100 for a second procedure with Bio-Alcamid.

"After the first procedure, it was like I was miraculously transformed overnight." he says. "I felt like me again. I would look in the mirror and say, 'hey stranger, there you are, where have you been?'"

"After the first procedure,
it was like I was
miraculously transformed
overnight. I felt like
me again." - Moffatt

Some aren't so thrilled with the results
Not ever yone who gets the treatment is as happy about their decision, though. For Lorne, who paid $3,500 for a Bio-Alcamid procedure, he initially felt better about himself, but the change felt unnatural and triggered acute self-consciousness. "I looked at my face a lot more and it became really tiring to be so self-aware all the time."

He found himself questioning whether his face looked real, if it was symmetrical, and whether people could tell he had something done. He noticed lines and bumps, and even after going back for touch-ups, he thought his face wasn't as smooth as others'. He also felt that he had somehow interfered with a natural process, that his face had been artif icially constructed and sculpted by doctors.

"I have a strong sense of self and I feel my face doesn't always ref lect that because sometimes it feels 'done,'" says Lorne. "There's definitely a difference between the changes nature makes to your body and those you choose to make to it."

Facing forward
After the swelling goes down and the initial euphoria of the procedure wears off, how do treatment patients feel about their decision years after it's been made?

"It changed my life in a big way. I wouldn't change it for the world," says Bradford. "Now, without me telling people I'm sick, they wouldn't look twice."

Even Malsah, who experienced complications after his procedure-his cheeks were asymmetrical and he needed numerous follow-up treatments to correct the problem- has no regrets. "It was still worth it. Def initely, def initely worth it," he says. "Now people don't stare, and if they do, I don't assume it's because of the lipoatrophy."

For Moffatt, removing the signs of facial lipoatrophy gave him a greater sense of well-being: because he looked better, his motivation around self-care increased. His diet improved, he exercised more, and looked after his skin. "When I look at pictures of myself before, I realize I've forgotten how disf igured I was," he says. "Generally, though, I don't even think about the procedure. It's a chapter of my life that has closed."

That isn't the case with everyone. It's been almost three years since Lorne's treatment and he still struggles to feel comfortable with his face-and his decision. "In general, I think it looks good," he says. "On the surface, it makes the fact that you have HIV less obvious, which is attractive. But it gives you a new face and that doesn't feel natural."

For Lorne, it's diff icult to believe that changing how your face looks won't affect your identity in some way. "I feel like I've lost a certain sense of integrity in my face and my personality," he says. "It strips away a bit of your history."

This sense of loss has had a big impact on how Lorne feels about his decision to get treatment. While he says he's accepted it and has gotten used to it, he's still not sure he made the right decision. "Was it worth it? I'm not sure, I'm really not sure. I'm ambivalent."

"This isn't about
beauty or vanity,
it's about correcting
a problem caused
by HIV and the drugs used
to treat it." - Bradford

Facing reality: vanity or necessity?
Lipoatrophy can severely alter not only how you look, but also how you feel about yourself. It seems only natural to want to correct the situation. But many people considering treatment are conflicted. Some feel that opting for the procedure makes them vain-as though they value their physical appearance more than their overall health.

Bradford begs to differ. "This isn't about beauty or vanity," he says, "it's about correcting a problem caused by HIV and the drugs used to treat it. It's like getting something back that was taken away from you."

Still others feel lipoatrophy is a small price to pay for the ability to manage HIV. When Moffatt began noticing the lipoatrophy, he struggled to reconcile the shame that came with the disf igurement with the knowledge that the drugs causing it were keeping him alive. But then his Radiesse treatment made him realize it wasn't just a procedure to address a superf icial issue. During the procedure, he joked with his doctor that he'd never thought he'd get cosmetic surgery.

"The doctor stopped what he was doing, looked me straight in the eye, and said, 'this isn't cosmetic surgery. It's a therapeutic procedure to rectify the negative effects of antiretroviral drugs,'" he recalls. "It was a very profound statement that cut straight to the heart of the psychological distress I was experiencing about my decision."

While Lorne would recommend treatment to someone with severe lipoatrophy, he would tell someone with a mild case to think carefully before having the procedure. "If you're doing it to be more attractive, the work doesn't make that much difference if you don't feel that way on the inside already," he says. "Your gut feeling about yourself is so deep that often medical procedures don't do anything to change that."

If people do choose treatment, Lorne advises them to keep realistic expectations. "Nothing's perfect," he says. "Don't go in expecting perfection or expecting to look like you did before."

Undergoing reconstructive treatment for facial lipoatrophy is an extremely personal decision, and it isn't for everyone. There are several factors to consider. Ultimately, it's up to you to decide what's most important to you and how much you can bear.

For Moffatt, that question is simple: "The bottom line for me is life," he says. "If I was offered HIV treatment that made me look funny and weird but kept me healthy and alive, I would take it. I would-and I have-endured the nasty side effects if it meant I would be alive. I just so happened to be in the right place at the right time for a treatment opportunity."

Jennifer Tsui is a Vancouver-based freelance writer

Reprinted from living+ magazine,
a publication of the Positive Living Society of British Columbia.
Article first published in:
living+ magazine, January/February 2009/ Issue 58.

"Reproduced with permission - Positive Living Society of British Columbia"

Positive Living Society of British Columbia

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