The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders

Introduction: The Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobility Spectrum Disorders (G-HSD) comprise a heterogeneous group of genetic disorders of abnormal synthesis and/or maturation of collagen and other matricellular proteins. EDS is commonly characterized by manifestations such as m...

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Autores principales:	Nimish Mittal, Daniel Santa Mina, Stephanie Buryk-Iggers, Laura Lopez-Hernandez, Laura Hussey, Alyssa Franzese, Joel Katz, Camille Laflamme, Laura McGillis, Lianne McLean, Maxim Rachinsky, Dmitry Rozenberg, Maxwell Slepian, Aliza Weinrib, Hance Clarke
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	Ehlers-Danlos Syndrome exercise rehabilitation models of care Generalized Hypermobility Spectrum Disorder Other systems of medicine RZ201-999 Medical technology R855-855.5
Acceso en línea:	https://doaj.org/article/6a970dea9ef64ee5a646d9feee8bd602
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spelling	oai:doaj.org-article:6a970dea9ef64ee5a646d9feee8bd6022021-11-08T07:40:29ZThe GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders2673-686110.3389/fresc.2021.769792https://doaj.org/article/6a970dea9ef64ee5a646d9feee8bd6022021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fresc.2021.769792/fullhttps://doaj.org/toc/2673-6861Introduction: The Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobility Spectrum Disorders (G-HSD) comprise a heterogeneous group of genetic disorders of abnormal synthesis and/or maturation of collagen and other matricellular proteins. EDS is commonly characterized by manifestations such as multi joint hypermobility that can lead to musculoskeletal pains, subluxations and dislocations, fragile skin, organ dysfunction, and chronic significant diffuse pain with fatigue, deconditioning eventuating to poor quality of life. Evidence suggests exercise and rehabilitation interventions may ameliorate symptoms of unstable joints, recurrent subluxations/dislocations, and chronic widespread musculoskeletal pain. To date, there have only been a few reports describing exercise and rehabilitation care strategies for people with EDS.Methods: In this manuscript, we describe the GoodHope Exercise and Rehabilitation (GEAR) program, its overarching principles, as well as the program development and delivery model. The GEAR program aims to decrease functional impairment, reduce pain, increase confidence in symptom self-management, and provide a community of support for people with EDS/G-HSD. To achieve these goals, we detail the model of care that includes exercise and rehabilitation therapy, education for self-management, and support accessing relevant community resources.Strengths and Limitations of the Study: GEAR represents a novel exercise and rehabilitation care model for people with G-HSD and various clinical EDS subtypes, beyond the commonly included hEDS subtype. Systematic collection of data via validated measurements is ongoing and will guide the refinement of GEAR and support the development of emerging exercise and rehabilitation programs for people with EDS.Nimish MittalNimish MittalDaniel Santa MinaDaniel Santa MinaDaniel Santa MinaStephanie Buryk-IggersStephanie Buryk-IggersLaura Lopez-HernandezLaura HusseyAlyssa FranzeseJoel KatzJoel KatzJoel KatzJoel KatzCamille LaflammeLaura McGillisLianne McLeanMaxim RachinskyDmitry RozenbergDmitry RozenbergMaxwell SlepianAliza WeinribHance ClarkeHance ClarkeHance ClarkeFrontiers Media S.A.articleEhlers-Danlos Syndromeexerciserehabilitationmodels of careGeneralized Hypermobility Spectrum DisorderOther systems of medicineRZ201-999Medical technologyR855-855.5ENFrontiers in Rehabilitation Sciences, Vol 2 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Ehlers-Danlos Syndrome exercise rehabilitation models of care Generalized Hypermobility Spectrum Disorder Other systems of medicine RZ201-999 Medical technology R855-855.5
spellingShingle	Ehlers-Danlos Syndrome exercise rehabilitation models of care Generalized Hypermobility Spectrum Disorder Other systems of medicine RZ201-999 Medical technology R855-855.5 Nimish Mittal Nimish Mittal Daniel Santa Mina Daniel Santa Mina Daniel Santa Mina Stephanie Buryk-Iggers Stephanie Buryk-Iggers Laura Lopez-Hernandez Laura Hussey Alyssa Franzese Joel Katz Joel Katz Joel Katz Joel Katz Camille Laflamme Laura McGillis Lianne McLean Maxim Rachinsky Dmitry Rozenberg Dmitry Rozenberg Maxwell Slepian Aliza Weinrib Hance Clarke Hance Clarke Hance Clarke The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
description	Introduction: The Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobility Spectrum Disorders (G-HSD) comprise a heterogeneous group of genetic disorders of abnormal synthesis and/or maturation of collagen and other matricellular proteins. EDS is commonly characterized by manifestations such as multi joint hypermobility that can lead to musculoskeletal pains, subluxations and dislocations, fragile skin, organ dysfunction, and chronic significant diffuse pain with fatigue, deconditioning eventuating to poor quality of life. Evidence suggests exercise and rehabilitation interventions may ameliorate symptoms of unstable joints, recurrent subluxations/dislocations, and chronic widespread musculoskeletal pain. To date, there have only been a few reports describing exercise and rehabilitation care strategies for people with EDS.Methods: In this manuscript, we describe the GoodHope Exercise and Rehabilitation (GEAR) program, its overarching principles, as well as the program development and delivery model. The GEAR program aims to decrease functional impairment, reduce pain, increase confidence in symptom self-management, and provide a community of support for people with EDS/G-HSD. To achieve these goals, we detail the model of care that includes exercise and rehabilitation therapy, education for self-management, and support accessing relevant community resources.Strengths and Limitations of the Study: GEAR represents a novel exercise and rehabilitation care model for people with G-HSD and various clinical EDS subtypes, beyond the commonly included hEDS subtype. Systematic collection of data via validated measurements is ongoing and will guide the refinement of GEAR and support the development of emerging exercise and rehabilitation programs for people with EDS.
format	article
author	Nimish Mittal Nimish Mittal Daniel Santa Mina Daniel Santa Mina Daniel Santa Mina Stephanie Buryk-Iggers Stephanie Buryk-Iggers Laura Lopez-Hernandez Laura Hussey Alyssa Franzese Joel Katz Joel Katz Joel Katz Joel Katz Camille Laflamme Laura McGillis Lianne McLean Maxim Rachinsky Dmitry Rozenberg Dmitry Rozenberg Maxwell Slepian Aliza Weinrib Hance Clarke Hance Clarke Hance Clarke
author_facet	Nimish Mittal Nimish Mittal Daniel Santa Mina Daniel Santa Mina Daniel Santa Mina Stephanie Buryk-Iggers Stephanie Buryk-Iggers Laura Lopez-Hernandez Laura Hussey Alyssa Franzese Joel Katz Joel Katz Joel Katz Joel Katz Camille Laflamme Laura McGillis Lianne McLean Maxim Rachinsky Dmitry Rozenberg Dmitry Rozenberg Maxwell Slepian Aliza Weinrib Hance Clarke Hance Clarke Hance Clarke
author_sort	Nimish Mittal
title	The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
title_short	The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
title_full	The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
title_fullStr	The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
title_full_unstemmed	The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
title_sort	goodhope exercise and rehabilitation (gear) program for people with ehlers-danlos syndromes and generalized hypermobility spectrum disorders
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/6a970dea9ef64ee5a646d9feee8bd602
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The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders

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