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Show Local woman attends cystinosis conference Pam Woodward of Pleasant Grove has just returned from the 5th Annual Cystinosis Family Conference, held at the University of California at San Diego (UCSD), La Jolla, California. The Woodward's daughter, Tahnie, has cystinosis, a genetic disease usually diagnosed in children chil-dren between nine and eighteen months old. The Aug. 23-25 conference was sponsored by The Cystinosis Foundation, Foun-dation, a national, all-volunteer, non-profit public foundation dedicated dedi-cated to providing services to chil dren suffering from the rare disease. dis-ease. Between three and four hundred children in the United States are currently diagnosed ashavingcys-tinosis. ashavingcys-tinosis. Medical experts believe the disease is the un diagnosed cause of death in still other children. The primary symptoms of cystinosis cysti-nosis are excessive thirst or urination, urina-tion, and failure to grow normally. The disease always leads to kidney failure. Early diagnosis and treatment treat-ment are critical to slowing its effects. Over one hundred people attended at-tended the three-day conference. Parents of children with the disease dis-ease had a chance to network with other families. They also heard from professionals in the field about the latest advances in treatment and efforts to find a cure. Anyone wishing more information informa-tion about the disease or The Cystinosis Cys-tinosis Foundation can write to the organization at 477 Fifteenth Street, Suite 200, Oakland, CA 94612. Or call either 408241-3946 or 415834-7897. |