My Fabulous Disease
I'm Gonna Wipe That AIDS Right Off of My Face
A Video Blog
By Mark S. King
July 26, 2011
Several years ago, I disclosed to someone that I was HIV positive before I agreed to his invitation for a date. "Yeah, I know," he casually replied, and then he looked a little embarrassed, as if he shouldn't have said it. And I knew exactly why. He had recognized my HIV status because of the appearance of my face.
I was crestfallen, and felt something close to shame, certainly embarrassment. Why is it that I can produce this blog, proudly march with HIV POSITIVE on my t-shirt in gay parades, and even write a book about coming of age during the dawn of AIDS -- but being viewed as positive because of my face upsets me so much?
Episode 36: I'm Gonna Wipe That AIDS Right Off of My Face
When I choose to disclose, privately or publicly, it's on my terms. I choose how and when to tell you. I want you to know.
Facial wasting (known as lipoatrophy
) takes that choice away. It's as if the disease is intruding, is taking the upper hand somehow, and worse, taking away my decision about when and to whom I disclose my status. And as much as I want to claim "Most Out Poz Guy Ever," I don't like wearing HIV across my face.
Most of us know "the look." It's the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications. Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I'll do what I can to wipe that shit off my face.
A few years ago I visited Dr. Gerald Pierone in Vero Beach, Florida (regarded as the leading expert in fillers and one of the Ask the Experts team at TheBody.com), and I documented that first visit and my facial filler treatments in a video blog, Treating My Facial Wasting. In that video I focused on my own attitudes -- Was I ashamed? Trying to look younger? Simply vain? -- and on the procedure process itself. Nearly a year later I revisited Dr. Pierone and got another treatment and documented it in my video blog, A Facial Wasting Update.
In this video episode of My Fabulous Disease, I revisit Dr. Pierone for a new treatment with the facial filler products Sculptra and Radiesse. While I'm there, I learn enough about Artefill, the only FDA-approved permanent facial filler, to make me strongly consider the product the next time my face needs fluffing.
This video also focuses on very specific information about the actual costs of facial filler treatment. Both Sculptra and Radiesse have patient assistance programs that significantly reduce the cost of the medication, but you still need to pay the physician to do the procedure, and that price can vary. Tip: don't allow any street corner vendor (or gym or even doctor office) to inject stuff into your face. Do some research and above all, find a physician who has done this many, many times (over 500 would be great). Be a smart shopper and empowered patient and ask about their experience level first.
I hope you find the video helpful and that you aren't too afraid of needles!
In the meantime, my friends, please be well.
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Comment by: Anonymous
Tue., Aug. 2, 2011 at 8:05 pm EDT
I don't think Sculptra or Radiesse are FDA approved here for use on large areas of the body, such as arms, legs, or butts... it is another need that has not been met yet in this country and it is frustrating. Dr. Pierone would probably tell you that it is extremely cost-prohibitive. Bio-Alcamid is a semi-permanent filler available in Canada (the manufacturer says it can be removed in case of overinjection, unhappiness with results, infection, or possible improvement of the lipoatrophy), but there have been reports of serious infections. I have also heard of Hydrogel injections, which are also removable, but the safety profile is not known yet, so it is not FDA approved here, either. Perhaps if you have fat on another part of your body you want to rid yourself of (as the stomach), maybe you might want to find a doctor who is experienced in fat grafting.
Comment by: Anonymous
Mon., Aug. 1, 2011 at 5:56 pm EDT
Think twice before you decide to have Artefill injected into your face. It is a permanent filler which runs a long term risk of infection and is extremely difficult to remove because of the small molecules. The only known way to remove it is by excision of surrounding tissues, leading to scarring and other disfigurements which will require more reconstructive surgery. Also, as people get older, the face may change shape and the permanent filler may show through the skin, making it look disfigured. Perhaps if you just hang in there, maybe scientists and researchers may come up with a filler that is a little longer lasting than Sculptra but allows for removal in case of infection, aging, possible eventual improvement of the lipoatrophy, or unhappiness with the results. Who knows, maybe they might even come up with a drug that may permanently reverse the lipoatrophy, and a permanent filler would prevent this. In the meanwhile, you are lucky to have a clinician like Dr. Pierone, who has done a great job on your face and is aware of the patient assistance program. Good luck and continued good health!
Replies to this comment:
Comment by: Mark S. King
(Fort Lauderdale, FL)
Tue., Aug. 2, 2011 at 10:08 am EDT
Those are exactly the misgivings I have about the permanent product, and I'm glad to know I'm not simply a worrier. This makes a great deal of sense and has changed my thinking on the subject. Thanks.
p.s. Can I get a butt lift?
Comment by: Michael
(Charleston, SC )
Sun., Jul. 31, 2011 at 6:27 pm EDT
Unfortunately, the reality for too many of us is that the cost of Artefill is prohibitive, to say the least. In fact, for the volumes needed to correct HIV-related lipoatrophy it is INSANELY expensive. And Medicare has made such a complete mess of their coverage of Scultpra & Radiesse that no doctor is willing to accept it, while PAP's reject anyone w/Medicare because "it's covered". The whole situation is frustrating beyond belief!
Comment by: Marla
Thu., Jul. 28, 2011 at 2:41 pm EDT
I hope this will be a good long-term solution for you. Best wishes.
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My Fabulous Disease
Mark S. King has been an active AIDS activist, writer and community organization leader since the early 1980s in Los Angeles. He has been an outspoken advocate for prevention education and for issues important to those living with HIV.
Diagnosed in 1985, Mark has held positions with the Los Angeles Shanti Foundation, AID Atlanta and AIDS Survival Project, and is an award-winning writer. He continues his volunteer work as an AIDS educator and speaker for conferences and events.
Speaking engagements: Mark King is available to speak to groups. Contact Mark about speaking at your organization or event!
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August 4, 2014 - AIDS 2014 Video Blog: A Farewell, and Final Thoughts on Melbourne
July 25, 2014 - AIDS 2014 Video Blog #5: Activist Theater, Condom Tryouts and a Mystery Man Revealed
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Interviews With Mark:
Mark King Looks Back at the AIDS Epidemic's Darkest Hour in the U.S. (May 14, 2008)
This Month in HIV: Crystal Methamphetamine and HIV (August 2007)
Articles by Mark:
Meth Burial (May 2008)
A Brief Disclaimer:
Outliving My Father (May 22, 2001)
Mark recounts how years of caring for friends dying of AIDS prepared him for taking care of his dying father
From The Advocate
AIDS Always Benefits from What We Don't Talk About (April 2001)
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