BACKGROUND: The Dystrophic Epidermolysis Bullosa (EB) Research Association (DebRA) of New Zealand has run 3 adventure camps specifically geared to the unique and specific needs of teenagers and young adults with EB. OBJECTIVES: We sought to describe how the 2007 winter camp was organized, funded, and run for teenagers and young adults with a range of EB severities. METHODS: Planning and fundraising by DebRA of New Zealand began 1 year before the camp. Nurses and international medical personnel volunteered as camp staff. Instructors qualified to assist persons with disabilities were hired to provide camp activities. The 5-day adventure camp was held at a national park on the North Island of New Zealand. RESULTS: The 2007 camp included 5 campers (aged 21-35 years) with recessive dystrophic EB, 3 of whom used wheelchairs, and two teenagers with EB simplex. All campers were male. Twelve international volunteers assisted with daily dressing changes and camp activities, which included skiing, whitewater rafting, and fly-fishing. LIMITATIONS: Challenges included difficulty in recruiting new campers each year, particularly female campers. CONCLUSION: The camp allowed campers to challenge themselves both physically and mentally, while developing lifelong friendships. It was immensely rewarding for all the volunteers. This camp demonstrated that it is possible to provide such activities safely to severely affected patients.
BACKGROUND: The Dystrophic Epidermolysis Bullosa (EB) Research Association (DebRA) of New Zealand has run 3 adventure camps specifically geared to the unique and specific needs of teenagers and young adults with EB. OBJECTIVES: We sought to describe how the 2007 winter camp was organized, funded, and run for teenagers and young adults with a range of EB severities. METHODS: Planning and fundraising by DebRA of New Zealand began 1 year before the camp. Nurses and international medical personnel volunteered as camp staff. Instructors qualified to assist persons with disabilities were hired to provide camp activities. The 5-day adventure camp was held at a national park on the North Island of New Zealand. RESULTS: The 2007 camp included 5 campers (aged 21-35 years) with recessive dystrophic EB, 3 of whom used wheelchairs, and two teenagers with EB simplex. All campers were male. Twelve international volunteers assisted with daily dressing changes and camp activities, which included skiing, whitewater rafting, and fly-fishing. LIMITATIONS: Challenges included difficulty in recruiting new campers each year, particularly female campers. CONCLUSION: The camp allowed campers to challenge themselves both physically and mentally, while developing lifelong friendships. It was immensely rewarding for all the volunteers. This camp demonstrated that it is possible to provide such activities safely to severely affected patients.
Authors: K Martin; S Geuens; J K Asche; R Bodan; F Browne; A Downe; N García García; G Jaega; B Kennedy; P J Mauritz; F Pérez; K Soon; V Zmazek; K M Mayre-Chilton Journal: Orphanet J Rare Dis Date: 2019-06-11 Impact factor: 4.123