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Photodermatol Photoimmunol Photomed. 2012 Dec;28(6):338-9. doi: 10.1111/j.1600-0781.2012.00693.x.

Perception of xeroderma pigmentosum support group members of xeroderma pigmentosum lifestyle impact.

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1
Department of Dermatology, University of New Mexico, Albuquerque, NM 87131, USA. dmhawkins@salud.unm.edu

Abstract

Xeroderma pigmentosum (XP) is a genetic condition, which can cause an extreme sensitivity to sunlight and an increased risk of skin cancer due to errors in DNA repair. An online survey was administered to a convenience sample of participants who were members of an online support group for XP patients and their families to determine common symptoms and quality of life. The Dermatologic Life Quality Index (DLQI) or the Children's Dermatologic Life Quality Index (CDLQI) was used depending on patient age. A total of four patients and two parents of young patients completed our survey. Quality of life as measured through the DLQI and CDLQI was moderately affected.

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