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      Two identical twin pairs discordant for longstanding anorexia nervosa and OSFED: lived experience accounts of eating disorder and recovery processes

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          Abstract

          Research into the risk of anorexia nervosa (AN) has examined twin pairs to further the understanding of the contributions of genetics, trait inheritance, and environmental factors to eating disorder (ED) development. Investigations of twin experiences of EDs have been biologically-based and have not considered the qualitative, phenomenological aspects of twin experiences. A gap in the literature exists regarding understanding of discordant twins with EDs. This research was developed in response, with the aim to deepen understanding of AN in discordant twins and to create novel ideas for further research and testing. The case studies presented in this article provide lived experience insights of two identical discordant twin pairs: one twin pair discordant for longstanding AN and one twin pair discordant for ‘atypical’ AN (the twin with AN has recovered). The perspectives and experiences of each co-twin (one with AN and one without) explore a number of factors that may have contributed to twin discordance in these cases, and how each twin has responded to the impact of AN in their lives. Through use of first-person accounts in case study presentation, this article centres social justice values of lived experience leadership and involvement in research. This article aims to extend current knowledge and understanding of EDs in discordant twins, particularly regarding risk for ED development, ED duration, diagnosis and treatment, and recovery processes.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s40337-024-01078-w.

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                Author and article information

                Contributors
                Rosiel.Elwyn@research.usc.edu.au
                Journal
                J Eat Disord
                J Eat Disord
                Journal of Eating Disorders
                BioMed Central (London )
                2050-2974
                2 September 2024
                2 September 2024
                2024
                : 12
                : 127
                Affiliations
                [1 ]Neuroscience and Psychiatry, Thompson Institute, University of the Sunshine Coast, ( https://ror.org/016gb9e15) Birtinya, QLD Australia
                [2 ]Brisbane, Australia
                [3 ]Canberra, Australia
                [4 ]Perth, Australia
                Article
                1078
                10.1186/s40337-024-01078-w
                11367789
                39223672
                e114d417-8b38-40bb-87bf-d383314f160e
                © The Author(s) 2024

                Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

                History
                : 1 February 2024
                : 2 August 2024
                Categories
                Case Report
                Custom metadata
                © BioMed Central Ltd., part of Springer Nature 2024

                anorexia nervosa,longstanding eating disorder,severe-enduring eating disorder,discordant twins,sibling carers,lived experience

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