An Examination of the Social Implications of Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome as New Diagnostic Categories

Lead Research Organisation: Cardiff University
Department Name: Sch of Social Sciences

Abstract

My proposed research is a sociological study of the diagnosis of Hypermobility
Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). These
diagnostic classifications were introduced in 2017 and describe conditions related to joint
hypermobility, replacing the former classifications of Joint Hypermobility Syndrome (JHS)
and Ehlers-Danlos Syndrome Type 3 (EDS 3), between which there were considerable
overlap (HMSA 2019).

Such a study will address a glaring gap in the literature, as despite increased
biomedical attention paid to joint hypermobility in the past decade (Castori et al. 2017),
there have been no studies into social aspects of the associated conditions. This will
contribute to a thriving tradition of the study of chronic health conditions within the
sociology of medicine, building on notable works by scholars including Bury (1982), Williams
(2000) and Charmaz (2002). This grants an invaluable voice to individuals with chronic
illnesses, allowing them to speak out about matters of their personal experiences and care
in ways that they would otherwise not be able to. My hope is that may challenge existing
medical ideas and practices that have the potential to cause harm, and spearhead the
development of improved diagnostic and support practices for those with HSD or hEDS,
ultimately fostering better patient outcomes.

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P00069X/1 01/10/2017 30/09/2027
2434054 Studentship ES/P00069X/1 01/10/2020 28/10/2023 Melissa Paige MARTIN