NxStageUsers, a dialyzor-run patient support and advocacy group, has announced the creation of a new dialyzor-support website, www.facesofdialysis.com, which is based on the photo-voice concept of self-expression through one’s own photography.
“For a while now, we have been looking for a simple and effective way to tell the story of chronic kidney failure and dialysis,” said Rich Berkowitz, NxStageUsers founder and president. “There are over 30 million people in the U.S. who have CKD (chronic kidney disease) and about 500,000 whose kidneys have failed. About 400,000 require dialysis in order to live.
“The photo-voice concept is a great way for us, as advocates of rehabilitative dialysis, to include and help this large group of people with kidney failure. It allows even those dialysis patients, who are shut-ins or do not speak English as a first language, to tell their stories in everyday terms. The new website will enable us to show the non-dialysis world how enterprising and independent people on dialysis can manage to live fairly normal, active lives in spite of kidney failure,” Berkowitz concluded.
Developed in the early 1990s, photo-voice has been widely used in community development, public health, and education as a simple, effective means of giving people a non-verbal means of expressing themselves, according to NxStageUsers. It enables anyone with an inexpensive digital camera or camera-cell phone to articulate a facet of their lives with photography and thereby create a highly accessible story in pictures. Participants do not need language skills. These photo stories, often accompanied by narratives or minimal captions, are then shared with others through exhibits and publications, which raise public awareness of a variety of causes and lifestyles.
The wesite, www.facesofdialysis.com, will be open anyone, worldwide, who is doing kidney dialysis either at home or in-center. NxStageUsers said participants may submit one picture-story annually of 10 photos or less, along with any captions that help narrate the story. Photos should be images of themselves, their care partners, loved ones, pets, etc. and their lives on dialysis, and taken without professional help. At least one photo must be of the participant in a dialysis treatment setting, and may be taken by a care partner or other acquaintance of the dialyzor. Other facets of the dialyzor’s life, including home, work, school, vacation, hobbies and other activities, are encouraged.
Technical details on to how to submit photos and captions, photo-story licensing agreement form, and guidelines for publication approval will be on the website. Once submitted, the photo-stories will be reviewed by a committee chaired by NxStageUsers Board Secretary and Director of Communications, David L. Rosenbloom, for subject matter and appropriateness, and then approved for publication on the website.
The NxStageUsers photo-story website is expected to go live by September 1, but people can submit their photo-stories via email beginning July 1. For submission instructions see Faces of Dialysis on the organization’s main website, www.nxstageusers.com
The new website will also announce details of what will become a future, annual event called Faces of Dialysis Contest. Five outstanding photo-story submissions will be selected each year and honored at the NxStageUsers Annual Meet-up & Conference, where the winning photo-stories will be exhibited along with biographies of the winners. This year’s conference is being held in New Orleans from October 2-5 at the Embassy Suites – Convention Center.
