Lights, Lipo, Action!
Essay by Martin Mailloux
Spring/Summer 2005 - I was diagnosed with HIV in 1994 with 140 T cells. After seven years of antiretroviral therapy, I started to develop lipodystrophy. My legs got thinner, my belly got bigger, and my bum became almost “undetectable.” With sunken eyes and shrunken cheeks, I felt like I had AIDS written all over my face. I looked weak, exhausted and sick. My family worried because they thought I was trying to hide a new terrible disease. I worried about my new metabolic problems, like rising cholesterol levels, which increase the risk of heart attack.
I switched one of my drugs—d4T (Zerit),
because it's well known that it's implicated
in lipodystrophy—to something more lipidfriendly. I also made some changes to my diet
and did a lot more Taoist Tai Chi. Shortly after the
switch, my cholesterol returned to normal and
my body fat slowly began to reappear. In 2003,
with the help of generous friends and family, I
got shots of New-Fill in my cheeks to restore my
face. With more Tai Chi, my legs and bum also
came back.
During this time, I became more aware of the
lipodsytrophy stigma experienced by a growing
number of PHAs—as well as the lack of relevant
information and support. I was exasperated by
the slowness of the health network to recognize
the serious effects of lipodystrophy on the
health, physical integrity and quality of life of
PHAs. I wanted desperately to do something
about this, so I joined LIPO-ACTION!—a direct
action group in Montreal that was created by
lipo-laden PHAs and their sympathizers. I was on
my way to becoming an HIV Lipo Warrior!
The medicine of LIPO-ACTION! is taking action. Since the beginning of our public action campaign, we have seriously disturbed those who claim that lipodystrophy isn’t so bad. By breaking the silence together, we inform, sensitize and mobilize the public about the
impact of lipo on PHAs. With 70 active members
in Quebec, we've organized many creative and
theatrical demonstrations at HIV events, where
our lipo characters wear masks and balloons as
bellies and humps, hold up placards with
smacking slogans and shake our big noisy pill
boxes. Our troop of “HIV mutants” and archetypal characters represents different facets of
the reality of lipodystrophy, including the HIV
Lipo Warrior (fighting for a better quality of life),
The Scream of Munch (loneliness and despair),
and the three insensitive and denying doctors—
Dr. Blindpills, Dr. Bouché (deaf) and Dr. Motus
(mute). The use of symbols enables us to fire the
imagination and touch people. After a skit you
can see the rising of dignity again in the eyes
of participants
In just a few months—with demos, workshops, lobbying politicians and the media, and
participating in press conferences and meetings
of AIDS organizations—LIPO-ACTION! has managed to break the silence about the reality of
lipodystrophy. Now we can hope for a better
response to a problem that is recognized.
I strongly recommend the medicine of LIPO-ACTION! By coming to our monthly meetings or creating a group in your area, you can better face lipodystrophy and strive together for concrete solutions. You can reach us by e-mail at lipoactionquebec@yahoo.ca.
Martin Mailloux
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Source: The Positive Side Spring/Summer 2005
From CATIE: CANADIAN AIDS TREATMENT INFORMATION EXCHANGE. For more information visit CATIE's Information Network at www.catie.ca
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