Social stigma in neurofibromatosis 1

Abstract

This chapter explores the significance and impact of social stigma, society's expressed negative assessment of and response to appearance and behavior which challenges cultural and social prescriptions for persons with NF1. Persons affected by NF1 may experience a variety of symptoms-visible tumors, learning disorders, and others which are not easily accepted by this society which places strong emphasis on beauty, good health, and accomplishment. The concept of stigma is discussed, and major sources of the creation of stigma for affected persons-family, school, workplace, and medical interactions-are described, and positive modes of coping with stigma are proposed.