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|Posted July 10, 2002|
|The faces of AIDS. It's a stubborn foe, especially when you think it can't happen to you|
|By Freed Tasker|
|July 8, 2002|
As powerful new drugs have helped hold HIV and AIDS at bay, they have cut the dreaded disease's death toll and created an ever-growing community of Americans living with the virus.
They're living better than they could have hoped a decade ago. Still, they face daunting problems, complicated pill regimens, sometimes debilitating side effects and often a stigma among family, friends and co-workers.
Many of those who have AIDS live in South Florida, where Miami, Fort Lauderdale and West Palm Beach were first, third and fourth, respectively, among U.S. cities with the highest number of new AIDS cases per 100,000 people in 2000.
|Here are the stories of four South Floridians living with AIDS LUCIO AMADO Young man felt cheated and lived in denial for five years. Lucio Amado arrived in Miami from Brazil in 1981 and spent his late teens living large, with casual sex with couple of girlfriends. "The unprotected sex haunted me, but at that time I thought AIDS was only transmitted by blood, not viginal fluids or sperm." At 21, he got tested for HIV; he was positive.||
He felt cheated.
``I was very surprised. You don't have to be promiscuous to catch HIV. Just a few relationships.''
For five years, Amado avoided anti-HIV drugs.
``I was in denial. I started escaping with marijuana and cocaine. Then I really started getting sick.''
Down 20 pounds from his usual 168, he tried to take the antiretroviral drugs, but had trouble staying on them.
''I still just couldn't picture myself with AIDS,'' he says.
Amado's life was probably saved by a Jackson Memorial Hospital drug adherence program run by Cynthia Flores.
``They made me understand I cannot afford to miss a doctor's appointment, I have to have blood work at least every two months. I saw other patients doing real good. We encouraged each other.''
Amado, now 34, is stable, volunteering as a peer counselor in the drug adherence group.
''My entire life has changed,'' he says.
Single mom is glad to be alive for her two teenage children Edmonde Benony, born in Haiti, was going to night school in Miami in 1999, trying to make a better life for herself and her two teenagers. But she kept coughing and was losing weight. Finally she went to the emergency room at Jackson Memorial Hospital.
``They told me I had HIV. I didn't feel nothing. I just went blank and rigid. I told the doctor I didn't feel like talking. I told him to leave the room.
'' The doctors gave her pills to take, 13 in the morning, 13 at night, to stave off tubercolosis, pneumonia or worse. But they were big, and she had trouble swallowing them.
``I'd never even taken a Tylenol before.''
She was supposed to take them with food, but she had no appetite. And if she took them without food, they made her nauseous.
``Before I got sick I was 145 pounds. I got down to 105.''
Certain she was dying, she started making plans for her children, Stephanie and Charles, then 14 and 16, to live with their grandmother. She took each for a private walk to tell them of her condition, and was surprised their reaction was mostly relief -- they understood why she was always going to the hospital.
Benony believes her life was saved when she got into a University of Miami program at Jackson where she could share with others the difficulties of being HIV-positive.
'I met people who were living with HIV for 18 years, 12 years, 11 years. I said, `Wow, now I will give it a shot.' But they said I would have to stay on my medications.''
Today, Benony, 48, is back up to 138 pounds, showing her appreciation by giving talks in Creole to others in the UM program. The pills are still too big, and they give her kidney problems.
``But they work for me, so I will keep on taking them.
``It's good to be alive for my children.''
A fanatic about his regimen, he's been living with AIDS for 16 years Joey Wynn, 37, now of Fort Lauderdale, was living in New York in 1986 when he took his partner, who had pneumonia, to a hospital and learned that both of them had AIDS.
``It's shocking to be told you've got a couple of months to live, that you should start getting your affairs in order.''
There was so little medical information in those days that he had to look up the disease in Scientific American magazine. But he was lucky. He stayed well for years without any medicines, avoiding them because he saw the side effects the early drugs wrought on his friends.
``Some of them became anemic, some of them died. It's scary to see your friends dropping like flies.''
Moving to Miami in 1990 after his partner died, Wynn spotted a newspaper article about an AIDS program at Miami's Mercy Hospital. He enrolled, got on an effective pill regimen with fewer side effects. Sixteen years and several new pill regimens later, he's working now at the non-profit AIDS Health Care Foundation in Fort Lauderdale. He's in such good health that people who meet him seldom realize he has AIDS.
``People always think they can tell, but they never know I have it.''
It isn't easy. He carries a plastic box in his pocket everywhere he goes with four pills for before lunch, three more for before bed. Even that is far less than the 20-to-40-pill regimens followed by some of his friends.
``I'm very structured. In a year I don't miss more than two or three doses. It's very important.'' He's also a fanatic about exercise, with thrice-weekly cardio and weight-lifting sessions at the gym, a diet with lots of fruits and vegetables and stress management.
''Other people can get away with not living right for a long time,'' he says. ``If you're HIV-positive, you can't.''
Even then, a few months ago the disease became resistant to his pills, and he had to switch to a newer drug regimen.
Wynn has a new partner now. He's also HIV-positive, so neither has to worry about giving HIV to someone who doesn't have it.
''It's also difficult to be intimate with someone who isn't going through what you are,'' he says.
Married a year ago, he believes he can live a normal life
At 29, working in the vegetable packinghouses in Perrine in 1991, Justin Bradford learned a woman he was intimate with had syphilis. Concerned, he went to a Miami-Dade Health Department clinic and took the HIV test.
Positive. He sat down and cried.
``I felt like somebody had just taken my life away from me.''
Knowing little about AIDS, he started going to classes and ended up on an eight-pill-a-day health department regimen of some of the earliest anti-HIV drugs.
``You know horse pills? They were that big. And you had to get up in the morning and take pills, have lunch and take pills, then take more pills before going to bed.''
From time to time he would quit.
``I just didn't take them. I was disgusted. I felt like I'd been cheated.''
Then, of course, his viral load would soar and his T-cell count would plummet. He wouldn't feel up to eating, so he'd lose weight and muscle. That was tough, because Bradford loved to play pick-up basketball and football.
But by 1995 he was in contact with the University of Miami Outreach Clinic in South Dade, and on a new drug regimen.
``But after two years my kidneys began to hurt. And I started having gallstones. They took me off it.''
For the past two years he's been on yet another pill regimen, -- four in the morning, four just before bed. So far, so good.
``I'm capable of doing most of the things I want, although I get tired sometimes. And you got to eat right. You can't have a fatty diet.''
Eventually, Bradford thought about dating, but it was awkward. ``I met some very nice young ladies. But if you meet somebody clean, you don't want to take a chance on messing up their lives.''
Then he met a woman who was also HIV-positive.
``We hit it off. We were married a year ago April. We're doing great. ``I think I can live a normal lifespan. I do.''
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