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— Dr. Gerald Pierone
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of survival for people with AIDS. But they came at a cost.
Physical side effects included an identifying AIDS stigma that
was literally written on patients’ faces.
Mark S. King is an AIDS survivor, activist and blogger.
Pierone has treated him for a condition known as facial
lipoatrophy or facial wasting, an abnormal loss of facial fat.
That disfiguration was caused by the early AIDS drugs and
had consequences that couldn’t be hidden.
“In the world of HIV/AIDS, it was like the scarlet letter,”
says Pierone. “And there was no effective treatment.”
The legacy of the arresting drugs and the side effects would
last a lifetime. “As the years progressed,” King recalls, “the
lines in our faces grew deeper. We represented something
very uncomfortable, this terrible epidemic and mortal crisis.”
Daniel Pearce, diagnosed with AIDS at the age of 39,
has been Pierone’s patient since 1994. “I was told I had six
months to live,” he says. Under Pierone’s care he began
taking a retroviral protease inhibitor called Crixivan, and
his immune system stabilized. But Crixivan was part of a
“cocktail” along with another drug, d4T, and that ultimately
led to facial wasting.
“I felt like with lipoatrophy, it was a lot worse than I ever
felt with the disease,” says Pearce. “My eyes were sunken
in. My face was like a skeleton with skin stretched over it. I
swear I looked like a dead person.”
The toxicities of the drug combinations created not only
facial wasting but other physical anomalies. “They produced
this weird form of mitochondrial toxicity. People would
lose not just facial fat but superficial fat in their arms and
elsewhere on their body,” Pierone says. This fat redistribution
is known as lipodystrophy and might improve with a change
in medication, but facial wasting was often a permanent
physical condition. “Even though patients’ immune systems
were coming back, they still looked sick,” says Pierone.
For physicians and patients, physical appearance took a
back seat to survival. A compromised immune system would
be attacked by a long list of opportunistic diseases such as
pneumocystis pneumonia, lymphomas, Kaposi’s sarcoma
and cryptococcal infections. These were the true killers.
“We really had very few tools,” Pierone says. “And until
the immune system could be restored, the battle for survival
was against these types of illnesses.” >>
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