Friday, January 6, 2012

The AIDS Alphabet: K is for Kaposi's Sarcoma

The AIDS Alphabet: K is for Kaposi's Sarcoma


Backbone. Copyright Alina Oswald 2008.
Do you remember the movie Philadelphia, starring Tom Hanks? Do you remember the scene that brings the reality of KS to the forefront, through Hanks' character, AIDS-stricken Andrew Beckett, who is asked about the "birthmark" on his face, the "birthmark" that was, rather, a Kaposi's sarcoma lesion? Continuing the AIDS alphabet, we reach the letter K, for Kaposi's sarcoma--a skin cancer described for the first time in 1872 by Hungarian dermatologist Moritz Kaposi. Here's how Kurt Weston, an AIDS warrior, award-winning photographer and subject of Journeys Through Darkness--A Biography of AIDS, describes, only briefly, life with KS (Kaposi's sarcoma).

Kaposi’s Sarcoma: KS is a tumor of the blood vessel walls. During the early years of the epidemic, it used to be the most common cancer in people living with AIDS. KS usually appears as pink, red or purple lesions on the skin, in the mouth or internal organs. KS can be treated with radiation and/or chemotherapy. Usually, lesions disappear once the immune system starts to recover (T cell count increases over a certain number).       

Here's one excerpt from Journeys Through Darkness dealing with KS.

front, spine and back cover jpeg of Journeys Through Darkness a biography of AIDS by Alina Oswald with photographs by Kurt Weston
Journeys Through Darkness: A Biography of AIDS
The appearance of KS lesions on Kurt’s body was a sign of the advanced stage of his disease. Yet, Kurt was lucky. His lesions didn’t hurt. They were discolored and very unattractive, but because they were dry, doctors could treat them with radiation.
    Other patients were not that lucky. Their lesions were fluid-y inside and would burst out and hurt. For these patients, therapies like chemotherapy or radiation were not always possible and they had to walk around and go out in public wearing their lesions on their faces and their bodies, carrying with them the grim—purple, in the case of KS—flag of AIDS, exposing themselves to being pointed at and even further stigmatized and discriminated against. Therefore, many people with KS lesions refused to go out anymore and became prisoners in their own homes with their disease.
    In 1993, when Kurt and other people attending SWAN meetings were battling KS on and inside their bodies, Philadelphia had just been released and become quite a hit. So those who’d gone to see the movie thought they learned a lot about the differences between a birthmark and a Kaposi’s sarcoma lesion. To this day, the photographer cannot watch the movie past one of its early scenes, when AIDS-stricken Andrew Beckett (played by Tom Hanks) covers his KS lesion on his forehead when his boss asks him if that was a birthmark… So, especially after the release of Philadelphia, people with KS lesions on their faces could not show themselves in public without being identified as having AIDS.
    Weston was one of these people that the epidemic was threatening to confine to their homes and isolate from the rest of the society. And Weston would not accept that. There had to be a solution to this situation and the photographer felt compelled to do something about it, to regain his—and others’—freedom to go out and about their businesses and be able to show their faces in public without fear of stigma or judgment.
    While at Pivot Point, Weston had worked with many make-up artists, so he called up some of them and asked them if they could help. They showed up at his SWAN workshops and offered make-up sessions, showing participants what kind of make-up to use that worked best with their faces, how to use the make-up to look most natural and how to best cover their KS lesions.
    Soon, the word went out and traveled across Test Positive Aware and other similar local organizations, and more people started to show up at Kurt’s workshops. So many of them, in fact, that they needed to bring chairs from all over the building to accommodate everybody. After a while, Kurt even had to ask for a larger room that would fill, each session, with seventy or eighty individuals.