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  • SCN was founded in 1995 after a group of stakeholders associated with the Sickle Cell Summer residential camps and other stakeholders in the Sickle Cell community met in response to feedback about the many challenges confronting Sickle Cell families surrounding health care, patient advocacy, and other related issues. The stakeholders agreed that a grassroots organization would both provide direct services to the Sickle Cell community and elevate Sickle Cell place in the national agenda.

    Since 1997 when SCN assumed responsibility of the Sickle Cell Summer Camp, its premier program became providing the summer camp experience to over 1000 Sickle Cell youth and adults. In the SC camp setting, these youth can learn about their disease from their peers’ perspective and develop new skills. They need to meet people who have the same illness as themselves and share stories and information about how to cope with the challenges of living with the disease. At camp they can discuss life experiences and strategies such as how to best develop academic skills, achieve social adjustment, and make wise choices when selecting a career and a mate. Children, who were campers in the early days, became counselors and camp staff as they grew older, and many of them still attend SCN’s fundraising and social events. Some of them went on to work in other organizations.

    Sickle cell disease is a chronic genetic condition that affects one out of every 400 Americans of African heritage, and one out of every 4,600 of the general population. It is most commonly found in persons of African, Central American and Mediterranean ancestry. Individuals with sickle disease are characterized by acute pain episodes, chronic anemia, organ damage, increased risk of infection, delayed social and physical development, and shortened life expectancy. Individuals with the disease are at increased risk for depression; dissatisfaction with body image (related to delayed puberty and growth, or physical changes due to treatment); social isolation; poor or stressful peer and family relations; and low self-esteem. Family relations may be strained because the youth may have other siblings who do not have sickle cell disease. Youth who have sickle cell disease have a high absence rate from school due to illness, which also impacts home life.

    Many of those affected feel there is a stigma attached to having this disease. Due to the constant pain, they may even be accused of drug seeking behavior. Medical circumstances often prevent youth from experiencing normal childhood or social activities, and reaching important social milestones.

    Grappling with these realities requires high self-esteem and a strong sense of direction for even the most centered adult, so these youth need a great deal of assistance to keep their spirits high and their outlook for future goals on a positive plane. These youth need to be able to build practical life and technical skills for their everyday lives that they can take beyond the camp session.

    Sickle Cell Community Health Network is a 501(c)3 non-profit corporation dedicated to serving people and families affected by Sickle Cell Disease.

    3060 El Cerrito Plaza #407,El Cerrito, CA.94530 +1 (510) 717-6504 maryncali1@aol.com
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