Psychological Interventions for Enhancing Adaptation in Children with Xeroderma Pigmentosum (Children of the Moon)

Abstract

Xeroderma Pigmentosum (XP), commonly known as “Children of the Moon,” is a rare genetic disorder characterized by defective DNA repair following exposure to ultraviolet (UV) radiation. As a result, affected children experience extreme photosensitivity and face a high risk of developing early skin cancers. Beyond its physical manifestations, XP has important psychological and social consequences for both children and their families. Daily photoprotection measures, social restrictions, and visible effects of the disease may contribute to emotional distress, social isolation, low self-esteem, and difficulties in school and peer relationships, although previous literature has mainly focused on the dermatological and genetic dimensions of XP, limited attention has been given to the psychological adjustment of affected children and the role of family-centered psychological support. This highlights the need to consider psychological care as an essential component of multidisciplinary disease management; Accordingly, this theoretical paper explores the psychological and familial challenges associated with XP and examines the contribution of psychological support within multidisciplinary care approaches. The paper discusses the psychosocial impact of the disorder on children and caregivers, reviews previous studies related to psychological adaptation and family support, and highlights the role of coordinated care involving dermatology, genetics, ophthalmology, neurology, and mental health services. The paper concludes that integrating psychological and family-centered interventions into multidisciplinary care can improve coping capacities, treatment adherence, and long-term quality of life among children with XP and their families.