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,"
"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
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
"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
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
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."
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
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
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."
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