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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