HIV/AIDS activist uses social media to educate

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A world-renowned HIV/AIDS activist is excited about hosting the first-ever HIV/AIDS-themed social media gathering in Chicago, aimed at spreading the message about disease prevention.

A world-renowned HIV/AIDS activist is excited about hosting the first-ever HIV/AIDS-themed social media gathering in Chicago, aimed at spreading the message about disease prevention. Rae Lewis-Thornton will co-sponsor on Thursday “An Evening with Rae: Meet, Greet &Tweet, A Social Media Event for a Socially Conscious Cause” at Hotel Allegro Chicago’s Encore Liquid Lounge, 171 W. Randolph St. The 48-year-old was diagnosed in 1987 with HIV when she was 23 and made the transition to AIDS in 1992. She contracted the disease through unprotected sex with a long-time lover and believes she was HIV-positive five years prior to her diagnosis. She learned of her status after donating blood. “AIDS is no longer a sexy topic. White America has moved on and Black America is in denial. We’re so paralyzed by the stigma and shame that we ignore it. That’s disheartening to me,” Lewis-Thornton told the Defender. HIV/AIDS is the number one killer of African-American women between ages 25 and 44. African Americans are three times more likely to have HIV/AIDS than any other racial group; and African-American women accounted for an estimated 69 percent of new infections for women, according to the Centers for Disease Control and Prevention. President Barack Obama announced Tuesday a national strategy plan to reduce new HIV infections annually by 25 percent from the current estimate of slightly more than 56,000. The plan calls for new education initiatives for minority communities and new standards for evaluating prevention programs, among others initiatives. Realizing her prevention message about the disease remains relevant, in an effort to combat the rising HIV/AIDS infection rates, Lewis-Thornton’s taken her message to new media platforms and capitalizing on the new social media trend of Tweet-ups. “Through tweets, re-tweets and Facebook feeds, an event small in numbers can reach thousands through social media. While people at the event tweet and update their Facebook status about the event as it progresses, those that aren’t there will get the message and forward it as if they were there,” she said. Lewis-Thornton kept her status a secret for years, became an AIDS activist and began speaking about the issue. When she opened up about her story, there was silence, said the former political organizer, referring to a speaking engagement 15 years ago where the audience must have overlooked literature that stated she had the disease in addition to being an activist. “I worked the room before it was my time to speak. Guys, some alone and some with dates, were hitting on my and passing me their numbers. I just smiled and continued on the mission of why I was there. When I got to the podium and told them who I was, Rae Lewis-Thornton, and was living with AIDS, you could hear a pin drop,” she said. It was that event that propelled her advocacy on a national level. A few months later she graced the cover of Essence magazine. “As I walked off the stage, Susan Taylor (then-editor of the publication) pulled me aside and said she wanted to tell my story. No one knew who I was; my name or my face. Taylor said my story needed to be told. I was the new face of AIDS,” Lewis-Thornton said. That December 1994 issue with her on the cover reads: ‘I’m Young, I’m Educated, I’m drug-free, and I’m dying of AIDS.’ Not long after the issue hit the newsstands, her health got worse before it got better. She wanted to throw in the towel and sensed in her physician’s voice that she was dying. “There was a time my size 2’s were too big. I had bouts of sickness because of medication I was on at the time, and one day, I was literally on my bathroom floor for about five hours. I couldn’t keep anything in my system and I was too weak to get off the floor,” she recalled. Ready to leave the medication alone, she called her physician as she lay on the floor and told her she couldn’t do it anymore. Her physician’s response scared her straight. Lewis-Thornton said as she began to tear up reminiscing about the incident. “She started screaming at me and telling me that I couldn’t give up and that she needed more time. More (enhanced) medicine would be available soon and she wasn’t going to let me give up. I could tell by the sound of her voice that I was dying. I found that resolve to make it through and I’m still here,” she said while a smile broke through the tears. The key to prolonged life is the medication, which she must pay $2,400 each month as a co-payment, she said. She receives her medical care from Stroger Hospital’s CORE Center. There are days when the medication still makes her weary, sick and doesn’t want to take it. But, not taking the medicine is never an option, said Lewis-Thornton, who is also a minister who is known as ‘Rev. Rae’ by fellow parishioners at Fourth Presbyterian Church. “I’m not confused about my status. I deal with the fact of my health. I take the dosage that I’m supposed to, on time, every time. You have to or else you’re putting yourself at risk. Just because it may give me headaches or other symptoms, I must still take it. I’ll then work with my doctor to find ways to deal with it,” she said. When asked if she thinks there’s a cure for AIDS, the answer was a quick “No.” “It’s one of the most intelligent viruses that exists. It replicates itself and gets stronger each time. It’s like when you throw water on a gremlin and it multiplies, becoming scarier. How do you get rid of something like that?” she asked. “At the end of the day, would I want to have AIDS, no, but that’s how it is and I’m going strong. There’s nothing I cant’ do. God has a purpose for me and I’m allowing him to use me for that purpose,” she said. Her advise to everyone: “Have some personal responsibility and know your status.” For more information, visit http://www.rltevent.eventbrite.com/ Copyright 2010 Chicago Defender. Photo: Courtesy

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