PoWeR Releases Groundbreaking Lipodystrophy Resources for HIV-Positive People
CONTACT: Nelson Vergel, Director
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 where we are after ten years of lipodystrophy, please visit http://thebody.com/content/toparts/art45454.html