November 9, 2005

Contact: Janet Poole (505) 272-1753; Courtney Smith (505) 272-3690

For the first time faculty members from the University of New Mexico Occupational Therapy Graduate Program (Janet L. Poole, Ph.D., OTR/L) and the College of Nursing (Cindy Mendelson, Ph.D., RN) will collaborate on atwo-year federally funded grant from the National Institute for Nursing Research to develop and test a self-paced education and self-management program for persons with scleroderma. The research will provide a comprehensive program that will educate persons with scleroderma and help them manage and cope with this disabling disease.

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as an autoimmune rheumatic disease. Scleroderma can cause thickening and tightening of the skin, as well as serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. Though the disease is neither contagious nor infections, scleroderma may eventually lead to disability or morbidity. Symptoms can vary from individual to individual and proper treatment may prevent a mild case from becoming life threatening.

Persons living outside of major metropolitan areas may be emotionally and geographically isolated from support groups, knowledgeable rheumatologists and other health professionals. In order to create an effective educational program for those with scleroderma to manage the disease from their own home, focus groups will be convened to identify individual experiences and support while coping with scleroderma. Based on these findings, researchers will create a self-management program, including a workbook and accompanying video/DVD/CD-ROM, to promote public awareness and provide an alternative to those with scleroderma.

Scleroderma patients can now live longer and more productive lives—with increased hope for the future. I f you currently have scleroderma or know of someone who would like to participate in the focus group, have them contact Janet Poole at (505) 272-8276 or jpoole@salud.unm.edu