By Cindy Cooper
An invaluable health website has special promise for women with HIV-AIDS, but not enough are using it. The new site, PatientsLikeMe (a link is at the bottom of this story), is a “Facebook” for people with difficult illnesses.
A support, information and health research site, it accentuates the value of patients helping other patients. HIV is one of five specific diseases covered.
Patients can chart their symptoms, check treatments and ask questions of others with the disease. The “others” may be across town or across the globe. A quick tour of the site found registered HIV patients from Ohio, Brooklyn, Canada, Texas and Amsterdam. One patient asks how to prepare for his first visit with a doctor; another seeks help for depression. Cyber answers flow as if someone were face-to-face with the real-life counselors of Shanti, described by Sharon Walton in “AIDS and Listening to Women” in this edition of On The Issues Magazine.
But, sadly, only 15 percent of the 760 registered users in the HIV forum are women (according to self-identification). The figure is miles below the skyrocketing number of women infected with HIV, now 27 percent of new infections in the U.S. and as high as 62 percent in Africa.
Yet, women suffer from more stigma and prejudice about HIV status than men, according to Molly Ginty’s story in this edition of On The Issues Magazine, “In the U.S., AIDS Spreads Rapid-Fire And Crosses the Gender Divide“
Patients offers a stigma-less way for HIV+ women to get help. A person may register with a pseudonym and choose what to say in a profile. Many are willing to share their stories. “I was infected by my ex-boyfriend who didn’t know he carried the virus at the time,” writes one woman. A 31-year-old Brooklyn woman reports that she was infected on purpose by an ex-boyfriend and is trying to come to grips with her anger. A 55-year-old woman in Toronto, says, “I was diagnosed June 21, 2000 after sustaining a needle stick injury on the job in Feb. of that same year.”
Others offer tips. “When diagnosed, I thought my life was over. I couldn’t have been more wrong,” writes a 41-year-old single mother living in Houston. A Delaware woman diagnosed with advanced AIDS three years ago says she is now in good condition. “People newly infected and people afraid of medicines need to realize that we can live. long and happy,” she writes. A 25-year-oldPennsylvania woman writes: “I currently share my experience with others and also help to educate the community.”
The MIT developers of PatientsLikeMe applied a simple philosophy. “We’re here to give patients the power to control their disease and to share what they learn with others,” they write.
Find this welcome resource for women with HIV, at PatientsLikeMe.com.
Cindy Cooper is a journalist in New York and managing editor of On The Issues Magazine Online.
