Lipoatrophy, the Ongoing Problem
July 31, 2002
"For all its discomfort and esteem damaging disfigurement, it was pointed out that Lipodystrophy, as we see it, is a spectacular achievement against the odds by the body's metabolic processes, benignly in most cases storing excessive fats to where they will do least harm -- at the body's extremities and away from the vital organs such as the heart and the liver where the effects could end life faster than HIV progression." (Ashley Fletcher, Dec. 2001, reporting from the 3rd Int'l Workshop on Drug Resistance & Lipodystrophy Athens www.ght.org.uk/agenda/html/agenda2511.htm.)
Well, I don't care about the spectacular achievement of the body to survive, if it's going to mean a well-rounded belly, a buffalo hump, or a face that belongs six feet under.
That is my first, negative impulse when I look at myself in the mirror and see my face caving in. The next impulse is to look at my savings account, looking for ways to get the toxic silicone implants or worse, throw my money out of the window with NewFill injections every year for the rest of my life. It doesn't take long for me to realize that my options are few when it comes to lipoatrophy or facial fat loss, a severe side effect of HIV treatment and perhaps a direct effect of co-habitating with a deadly virus in the same body.
The first signs of this lipoatrophy appeared in the late 1990s after a few years of successful antiviral response from treatments. Today, we even have a conference devoted to this problem, the next one to be held September 2002 in San Diego, California. Research is ongoing into how the body metabolizes all the antivirals that we put into our systems to combat HIV.
Some of us have dropped all protease Inhibitors from our medication regimen hoping to see this horrible problem subside. The studies' conclusions on lipoatrophy out of the Barcelona International AIDS Conference are not encouraging: no change or reverse of this problem after sparing PIs. Serostim is emerging as an option and is currently being used by HIV specialists to fight metabolic changes associated with HAART. It is a human growth hormone and doctors are specifically using it to fight fat accumulation rather than lipoatrophy or fat loss.
Another concern in the healthcare community is that patients are delaying treatment or worse, missing doses in their antiviral regimens because of their concern of body changes. It is a concern for some individuals that when they start losing fat in their face or legs other people will know they have HIV and begin to discriminate against them because of their status. Clearly this is a huge problem. How all of these metabolic changes happen, no one is quite sure. But for the majority of us that cannot afford NewFill treatment trips to Mexico or abroad, living a healthy life-style could be our only weapon.
My personal idea of a healthy life-style is NOT checking into a vegan convent, but to observe some simple standards to increase some healthy outcomes. For example:
On a personal note, I've opted for a "drug holiday." Fortunately my CD4 count allows me the luxury of interrupting treatment and taking a break from the toxicity of the medications, the very medications that have empowered me to still be living, breathing and writing these words.
To finish, let me remind the community that one of the most important things to remember in the fight against this disease is to take care of ourselves and be kind to our bodies and minds. Don't forget that our bodies and the way they metabolize food and medicine work better when relaxed and in optimal condition.
Roberto Gonzalez is currently the Treatment Outreach Specialist at the Seattle Treatment Education Project.
The FDA Has Accepted the Filing for an Injectable Poly-L-Lactic Acid Called "Sculptra" to Treat Facial Lipoatrophy (February 5, 2004)
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Ezine.