Socio-Cultural Dimensions of Neurofibromatosis

该项目将研究神经纤维瘤病（NF）患者的生活经历、应对模式和社会支持，神经纤维瘤病是一种常见的慢性进行性神经系统疾病。 患有神经纤维瘤的人一生都面临着一种毁容和致残的慢性疾病，其预后不可预测。 该项目将研究地方和国家的 NF 支持团体，并将记录媒体创造的“象人”形象作为可怕和污名化疾病的化身如何影响个人及其家人对其状况的适应。 该研究将采用对个人、家庭以及神经纤维瘤支持小组的深入访谈和观察。 这项研究意义重大，因为它将展示个人和家庭如何适应（组织、应对）遗传和慢性疾病、耻辱和残疾的复杂性。 这项研究将揭示耻辱作为一种社会状况，以及支持团体在应对戏剧性、耻辱性和往往不可预测的健康状况方面的作用。

This project will study the life experiences, coping patterns and social supports of individuals with neurofibromatosis (NF), a common chronic and progressive neurological disorder. The individual with NF faces a lifetime of dealing with a disfiguring and disabling chronic disease whose prognosis is unpredictable. The project will study the local and national NF support groups, and will document the ways in which the media-created image of "the elephant man" as the personification of the dread and stigmatized disease has affected the adaptation of individuals and their families to their condition. The research will use indepth interviews and observation of individuals and families and NF support groups. This research is significant because it will show how individuals and families adapt to (organize, amd cope with) the complexities of genetic and chronic illness, stigma and disability. This research will be shed light on stigma as a social condition, and on the role of support groups in dealing with dramatic, stigmatized and often unpredictable health conditions.