49a165a4c5b2979aa2cc9e57df80e8e1 blsf-19-00011-v2.pdf 6de4be73325c6bcc2b04550222906eb32cab9626 blsf-19-00011-v2.pdf 4f58ed98bf43e178c975b8e0325820ae0f2355083c85b41142b5321cf5d35e56 blsf-19-00011-v2.pdf Title: 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 "2279 Subject: 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. Keywords: reference models; Epidermolysis Bullosa (EB); rare diseases; expert patient; dystrophic epidermolysis bullosa (DEB); storytelling; successful cases; classmates; family; sisterhood; affect; sexuality Author: Mar Salas-Llopart and Lydia Giménez-Llort Creator: LaTeX with hyperref Producer: pdfTeX-1.40.21 CreationDate: Wed Jun 21 10:10:57 2023 CEST ModDate: Wed Jun 21 10:13:35 2023 CEST Custom Metadata: no Metadata Stream: no Tagged: no UserProperties: no Suspects: no Form: none JavaScript: no Pages: 2 Encrypted: no Page size: 595.276 x 841.89 pts (A4) Page rot: 0 File size: 206264 bytes Optimized: no PDF version: 1.7 name type encoding emb sub uni object ID ------------------------------------ ----------------- ---------------- --- --- --- --------- BTFGED+VnURWPalladioL-Bold Type 1 Custom yes yes no 10 0 ZNKOOR+VnURWPalladioL Type 1 Custom yes yes no 15 0 XVIXIN+URWPalladioL-Bold Type 1 Custom yes yes no 19 0 KIVULP+URWPalladioL-Roma Type 1 Custom yes yes no 24 0 TZMXPD+URWPalladioL-Ital Type 1 Custom yes yes no 28 0 Jhove (Rel. 1.28.0, 2023-05-18) Date: 2025-02-20 02:15:03 CET RepresentationInformation: blsf-19-00011-v2.pdf ReportingModule: PDF-hul, Rel. 1.12.4 (2023-03-16) LastModified: 2025-02-19 10:19:15 CET Size: 206264 Format: PDF Version: 1.7 Status: Well-Formed and valid SignatureMatches: PDF-hul MIMEtype: application/pdf PDFMetadata: Objects: 87 FreeObjects: 1 IncrementalUpdates: 0 DocumentCatalog: PageLayout: SinglePage PageMode: UseNone Info: Title: 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 "2279 Author: Mar Salas-Llopart and Lydia Giménez-Llort Subject: 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. 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