The Issue: Support for Youth with Stigmatizing Medical Conditions
Youth with rare medical conditions that bring about potentially stigmatizing symptoms such as incontinence can find it difficult to reach out for help and access support, according to research published in the journal Physical Disabilities: Education and Related Services. However, this and other sources note that peer support groups give people with a common illness a chance to share knowledge and experiences, which health workers may not be able to understand due to a lack of firsthand experience. These reciprocal relationships can promote healing acceptance, according to research from the World Health Organization.
The Campaign: Funding a Museum Trip for Youth
If 50 people donate $10 to this Grassroots campaign, then Youth Rally Committee can provide a trip to the Experience Music Project Museum (EMP) for 50 youth attending a weeklong camp for teens with bladder and bowel conditions. Each additional $10 raised will go toward bus rental for transport from the University of Washington to EMP, and admission tickets for additional youth.
Through this campaign, participants in the 2013 Youth Rally for young people with bladder or bowel disorders will have the option to be part of a day trip to the EMP, which the staff believes will be the highlight of the rally. The museum explores the history of the black leather jacket, icons of science fiction, and the art of video games through interactive exhibitions such as a full-size Dalek and a participatory scream booth. In addition to their museum visit, day-trip participants will spend part of the day at Green Lake, take part in a scavenger hunt, and have a picnic under the Space Needle, all while benefiting from the company and support of peers struggling with the same medical issues.
Youth Rally Committee
The Youth Rally Committee creates a community for young people with rare medical conditions to bond over shared experiences, learn about symptom management, and find relief from the sense of alienation that accompanies these rare conditions. Kids aged 11–17 with bowel and bladder disorders such as ulcerative colitis, Crohn’s disease, and cancers of the bowel or bladder come together once a year for a weeklong rally on a college campus. During their stay, they take part in outdoor games and off-campus trips to local museums, and learn how to manage their conditions with activities overseen by nurses and counselors who also have similar conditions. Counselor skits and a camp dances relieve stress in the evenings, while off-campus events promote medical self-management in a public setting.
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