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This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resilience and rejection of feelings of stigma increased with age and experiences of stigma differed across cultures. Findings indicate a need to develop social skills training to help people reject feelings of stigma. Future research should explore perspectives of families, friends and formal institutions and their potential to cause or reduce feelings of stigma.

Original publication




Journal article


J Health Psychol

Publication Date





2031 - 2041


adjustment, appearance, chronic illness, dermatology, stigma, Adolescent, Adult, Age Factors, Aged, Aged, 80 and over, Emotional Adjustment, Female, Humans, Interviews as Topic, Male, Middle Aged, Qualitative Research, Social Stigma, United Kingdom, Xeroderma Pigmentosum, Young Adult