Reference Models for Children and Young People with Epidermolysis Bullosa : First Case Report on the Protective Factors and Challenges for Psycho-Social Maturation and Resilience
Salas-Llopart, Mar (Universitat Autònoma de Barcelona. Departament de Psiquiatria i de Medicina Legal)
Gimenez-Llort, Lydia (Universitat Autònoma de Barcelona. Institut de Neurociències)
Universitat Autònoma de Barcelona. Departament de Psiquiatria i de Medicina Legal

Date:	2022
Description:	2 pàg.
Abstract:	Epidermolysis Bullosa (EB) is a chronic disease with multiple clinical presentations, depending on the subtype. It is characterized by the structural fragility of skin and tissues which results in lesions. Its low prevalence contributes to the lack of knowledge of the disease by the general population and the health sector. The disorder's heterogeneity adds challenges in describing psycho-social affectations. Therefore, our current international project searches for reference models for children and young people with EB, as well as the elaboration of a guidebook with different life stories for them to learn about skills and strategies proven to help to achieve personal/professional success despite the EB condition. In the present work, a qualitative and phenomenological interview with Karen Puga, an expert adult patient with dystrophic EB from Mexico, explored several social dimensions/ages affected in EB and their impact on self-esteem. The semi-structured interview depicted several life events and experiences related to her psycho-social maturation that the patient identified as the most negative or positive. The most severe obstacles were experienced during childhood in the scholarly scenario. However, some of those classmates later became friendly adults, providing evidence of the temporality of some adverse life events and the relevance of maturation and resilience processes, both of herself and her counterparts. Her parents' professional profiles (nurses) and the essential role of her sister were described as foundational for her well-being and self-esteem. Multidimensional understanding of affective relationships, sexuality, and positive engagement in professional activities illustrated the development of positive dimensions of her adulthood despite the complexity of psycho-social factors in EB.
Rights:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Language:	Anglès
Document:	Article ; recerca ; Versió publicada
Subject:	Reference models ; Epidermolysis Bullosa (EB) ; Rare diseases ; Expert patient ; Dystrophic epidermolysis bullosa (DEB) ; Storytelling ; Successful cases ; Classmates ; Family ; Sisterhood ; Affect ; Sexuality
Published in:	Biology and life sciences forum, Vol. 19, Núm. 1 (September 2022) , p. 11, ISSN 2673-9976

DOI: 10.3390/IECBS2022-12948

2 p, 201.4 KB

The record appears in these collections:
Research literature > UAB research groups literature > Research Centres and Groups (research output) > Health sciences and biosciences > Institut de Neurociències (INc)
Articles > Research articles
Articles > Published articles