Η κλινική συμπτωματολογία και η ψυχοκοινωνική υποστήριξη των πασχόντων με αλμπινισμό

Abstract

The present paper attempts an updated literature review, describing the symptomatology and the psychosocial support of patients with albinism, aiming to meet the needs of educational society’s corresponding information. Albinism represents a rare, genetically inherited condition, characterized by a varying extent of hypopigmentation of the individuals’ hair, skin and eyes. Its clinical features include patients’ multiple congenital visual impairments and ocular lesions, whereas, by majority, its neuropsychological profile is distinguished by the individuals’ typical levels of intelligence, reading deficits, as well as the difficulties of certain executive and sensory-perceptual functions. Moreover, albinism is defined by a set of social-emotional and adaptive difficulties of interpersonal interaction, and of clinical psychopathology. Counterbalancing the patients’ inadequate broader socio-cultural context, a number of personalized or group psychosocial interventions, occasionally interdisciplinary and of increased social validity, has been carried out in preschoolers, primary school-aged children, adolescents and adults with albinism. Combining psychoeducational, counseling, coaching, athletic, music therapy, speech therapy and occupational therapy activities at in-school, extracurricular, domestic, or clinical level, a majoritarian improvement of the targeted participants’ intrapersonal deficits, interpersonal and behavioral skills, as well as of psychiatric comorbidity, was noted. Nevertheless, by arranging the weak methodological points of the conducted interventional programs, the implementation of a set of future research proposals is possible, contributing to the comprehensive and inclusive individuals’ support.