FOR
IMMEDIATE RELEASE
PoWeR
Releases Groundbreaking Lipodystrophy
Resources for HIV-Positive People
CONTACT: Nelson Vergel, Director
powertx@aol.com
713-539-1978
Houston,
April 8, 2008- Program for Wellness
Restoration, PoWeR, released the
results of the largest online patient
surveys performed to date on lipodystrophy
options and resources along with
a free Spanish translation of their
book :"Built to Survive".
The 776- people survey summarizes
the main therapeutic options used
in the HIV community along with
a list and ratings of providers
who specialize in reconstructive
procedures for HIV-related body
changes.
Ten years have passed since the
first report of lipodystrophy at
an HIV conference. The excitement
and hope for a longer life that
accompanied the arrival of Highly
Active Anti-Retroviral Therapy (HAART)
has been tempered by accounts of
humps, bellies, and facial wasting.
A decade on, many unanswered questions
and misconceptions about HIV associated
lipodystrophy persist with only
a limited number of treatment options
available. Frustrated and tired
of waiting for answers from the
medical community, many people living
with lipodystrophy have turned to
the internet for advice, treatment
and support in hopes of reversing
some of the devastating effects
of this stigmatizing syndrome.
Lipodystrophy is a condition of
abnormal fat redistribution that
can lead to either lipohypertrophy
(fat accumulation in specific areas
of the body such as the neck, belly,
upper torso, and breasts) or lipoatrophy
(fat loss in the face, buttocks,
arms and legs).
"I
am very happy that we have been
able to provide this key information
to the HIV community", said
Nelson Vergel, founding director
of PoWeR. "People have been
wanting this important health resource
for 10 years after the first report
of lipodystrophy was reported at
an HIV conference", added Vergel.
The results of the survey can be
found at: Survey
Results
A list of providers with comments
from patients can be found at :
Survey
Results
A free PDF (Adobe Acrobat Reader
format) copy of the Spanish translation
of the book Built to Survive can
be downloaded from : http://powerusa.org/pdf/Fortaleceteysobrevive1.pdf
Another distressing and negleted
issue related to HIV lipodystrophy
is wasting of the buttocks. Currently,
there is no research being performed
in the US or abroad on this debilitating
problem that can cause pain and
discomfort in patients who have
to sit down for extended periods
of time at work or school. PoWeR
gathered all available anecdotal
and research information on the
subject and made it available in
their new web page: http://facialwasting.org/buttock_wasting.htm
PoWeR is a national non -profit
all-volunteer organization that
provides patient-friendly educational
information to HIV-positive people
and their clinicians about ways
to improve HIV treatment response,
side effects, and quality of life.
More information can be found at
www.powerusa.org
For an update on were we are after
ten years of lipodystrophy, please
visit http://thebody.com/content/toparts/art45454.html
Regards,
Nelson
Vergel
Director
Program for Wellness Restoration
powerusa dot org
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