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St. Jude "Voices" help AIDS patients feel less isolated

stjude.org

MEMPHIS, Tenn. (WMOT)  --  St. Jude’s Children’s hospital in Memphis has launched a program that gives a voice to individuals diagnosed with HIV/AIDS.

St. Jude’s launched a Pediatric AIDS Clinic at the direction of founder Danny Thomas in 1987. The clinic now serves about 250 patients.

In the years since, clinic staff noted how often patients spoke about their isolation, the feeling that they were the only ones dealing with an AIDS diagnosis.

So in 2012, St. Jude’s launched the Voices program, an effort to collect the oral histories by HIV positive patients. Social Worker Sylvia Sutton says the 18 histories collected to date have accomplished exactly what St. Jude hoped.

“People say that they can identify with the person that they heard. That it sounds like, ‘That could have been me speaking,’ or ‘If they can get to this point, then I want to get to that point.’ So I hear those kinds of responses.”

A patient we’ll call John was one of those who recorded an oral history for the Voices project. John says he didn’t want to waste time feeling sorry for himself, but hoped instead that sharing his story would make a difference.

“Here’s somebody’s voice saying that, ‘Well, I’m going through this to, and it’s not as bad as it sounds.’ You can do anything you want to do. You can overcome this. You don’t have to be depressed and all of that. So that’s why I chose.”

The recordings are also used to train medical staff and medical students at St. Judes. Infectious disease specialist Dr. Aditya Gaur says the recordings help medical staff see beyond the disease to the person struggling with a life changing diagnosis.

“When it comes as listening from a patient, it’s different. This is a way of bringing bedside medicine into classrooms.”

Dr. Gaur says St. Jude’s continues to add new oral histories to the Voices collection, and hopes to make them available online soon.