4ad1c84c0c7b71e75a7e092e3e9de460 blsf-19-00012-v2.pdf a68c13ac39b9b0dd2bca4ca888b498997d4e4dde blsf-19-00012-v2.pdf 57982b3f84cf4e411cb56566d8704962a202fae207108ed929b68db0e4ea8601 blsf-19-00012-v2.pdf Title: Reference Models for Children and Young People with Epidermolysis Bullosa: First Case Report on the Challenges, Rewards, and Limiting Factors for Successful Academic and Professional Achievements "2279 Subject: Epidermolysis bullosa (EB), also known as Butterfly skin, is a term for a heterogeneous group of rare genodermatosis disorders resulting in painful mucocutaneous blisters and extreme fragility with minor trauma or friction. The low prevalence and heterogeneity of EB, clinically classified into 4 major groups and over 30 subtypes, lead to significant psychological and social research constraints. An inverse correlation between disease severity and quality of life in patients and their families has been described. Psycho-social aspects in people with more severe subtypes of EB and body dysmorphia refer to loss of self-esteem and coping skills, low self-control, intense fear, anxiety, depression, and social isolation. On the other hand, acute, chronic, and procedural pain, common comorbidities in EB, can negatively affect cognition and interfere with academic and professional achievements. Here, we present the first case report of a current international project that searches for reference models for children and young people with EB and the creation of a guidebook with different life stories of strategies and skills proven to help achieve academic/professional success despite EB's condition. We analyze the semistructured interview with Sonia Ortiz Romero, alias ‘Mariposa de cristal’, an expert patient with dystrophic EB and co-founder of ‘Son mis alas, I.A.P’ (‘They are my wings, NGO’), together with his brother Marcos Humberto. Her storytelling illustrates challenges, rewards, and limiting factors that make their Mexican association a successful case in helping other EB patients in Santiago Tianguistenco with their physical, psychological, and social well-being, as well as raising social awareness. Keywords: reference models; epidermolysis bullosa (EB); rare diseases; expert patient; dystrophic epidermolysis bullosa (DEB); storytelling; successful cases; education; coping strategies; family and social support Author: Ju Young Shin Kang and Lydia Giménez-Llort Creator: LaTeX with hyperref Producer: pdfTeX-1.40.21 CreationDate: Mon Jun 19 03:35:57 2023 CEST ModDate: Mon Jun 19 03:37:52 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: 206777 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 YLEVUT+URWPalladioL-Bold Type 1 Custom yes yes no 19 0 INSYVP+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 02:15:05 CET RepresentationInformation: blsf-19-00012-v2.pdf ReportingModule: PDF-hul, Rel. 1.12.4 (2023-03-16) LastModified: 2025-02-19 10:17:42 CET Size: 206777 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 Challenges, Rewards, and Limiting Factors for Successful Academic and Professional Achievements "2279 Author: Ju Young Shin Kang and Lydia Giménez-Llort Subject: Epidermolysis bullosa (EB), also known as Butterfly skin, is a term for a heterogeneous group of rare genodermatosis disorders resulting in painful mucocutaneous blisters and extreme fragility with minor trauma or friction. The low prevalence and heterogeneity of EB, clinically classified into 4 major groups and over 30 subtypes, lead to significant psychological and social research constraints. An inverse correlation between disease severity and quality of life in patients and their families has been described. Psycho-social aspects in people with more severe subtypes of EB and body dysmorphia refer to loss of self-esteem and coping skills, low self-control, intense fear, anxiety, depression, and social isolation. On the other hand, acute, chronic, and procedural pain, common comorbidities in EB, can negatively affect cognition and interfere with academic and professional achievements. Here, we present the first case report of a current international project that searches for reference models for children and young people with EB and the creation of a guidebook with different life stories of strategies and skills proven to help achieve academic/professional success despite EB's condition. We analyze the semistructured interview with Sonia Ortiz Romero, alias ‘Mariposa de cristal’, an expert patient with dystrophic EB and co-founder of ‘Son mis alas, I.A.P’ (‘They are my wings, NGO’), together with his brother Marcos Humberto. Her storytelling illustrates challenges, rewards, and limiting factors that make their Mexican association a successful case in helping other EB patients in Santiago Tianguistenco with their physical, psychological, and social well-being, as well as raising social awareness. 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