Living with genetic disorder : the impact of neurofibromatosis 1
著者
書誌事項
Living with genetic disorder : the impact of neurofibromatosis 1
Auburn House, c1999
- alk. paper
大学図書館所蔵 全7件
  青森
  岩手
  宮城
  秋田
  山形
  福島
  茨城
  栃木
  群馬
  埼玉
  千葉
  東京
  神奈川
  新潟
  富山
  石川
  福井
  山梨
  長野
  岐阜
  静岡
  愛知
  三重
  滋賀
  京都
  大阪
  兵庫
  奈良
  和歌山
  鳥取
  島根
  岡山
  広島
  山口
  徳島
  香川
  愛媛
  高知
  福岡
  佐賀
  長崎
  熊本
  大分
  宮崎
  鹿児島
  沖縄
  韓国
  中国
  タイ
  イギリス
  ドイツ
  スイス
  フランス
  ベルギー
  オランダ
  スウェーデン
  ノルウェー
  アメリカ
注記
Includes index
Bibliography : p. [187] - 197
内容説明・目次
内容説明
A description of the social, educational, and economic impact of living with a neurological genetic disorder, neurofibromatosis 1. The many unpredictable and potentially stigmatizing possible symptoms of NF1, which range from physical disfigurement to severe learning disorders, may have serious consequences in every aspect of daily life. NF1 was for many years wrongly diagnosed as the Elephant Man's Disease.
Ablon examines the psychosocial costs of this misdiagnosis and the ways in which stage, screen, and television parlayed The Elephant Man into the personification of the grimmist extreme of ugliness. This portrayal engendered fear and anxiety for affected persons and their families and also had an impact on the scientific and medical communities. Ablon analyzes the factors that affect individual positive adaptation to NF1 and the demands of American society, and offers suggestions for families, support systems, and health care providers for treatment of affected individuals.
目次
Introduction
Psychosocial Issues in Living with NF1
Diagnosis and Response of Families of First Generation Adults to Their Condition
Intergenerational Sharing
The School Years--The Staging Ground for Stigma
Getting and Keeping a Job
The Search for Intimacy
Marriage and Childbearing
Gender Response
Living with Uncertainty
The Specter of "The Elephant Man"
Stigma
NF Support Groups
Medical Experiences
Impact
Conclusion
Appendixes
References
Index
「Nielsen BookData」 より