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

 Ehlers-Danlos syndrome / Posted 7 months ago

This research project aims to understand the social factors surrounding the diagnosis of conditions that are related to joint hypermobility. This includes conditions that are rarely diagnosed, including hypermobile Ehlers-Danlos syndrome, and rare diseases such as Marfan’s syndrome and osteogenesis imperfecta. It explores how guidance about diagnosing hypermobility is written, who makes decisions about diagnosing hypermobility, how these decisions are made, and how this affects different people.

 

To understand this in-depth, a variety of research methods are used, including analysis of documents and webpages; observations of disease support groups online and in-person; and interviews with a variety of stakeholders including patients, parents, carers, medical professionals, social care professionals, and other researchers. Research participants also have the opportunity to send the researcher other items that allow them to express themselves and their experiences, such as diaries, photographs, drawings, or poetry.

 

The research is part of a PhD project in the social sciences and is funded by the ESRC Wales Doctoral Training Partnership.

  • Inclusion Criteria : Participants must be aged 18 or over and able to communicate using spoken English, written English, or BSL. Anyone whose life is affected by hypermobility, including indirectly or in a professional capacity, is welcome to contribute.
  • Study end date : 30/09/2023
  • Wales-Based Study Contact : Ms Melissa Martin
  • Principal Investigator : Ms Melissa Martin
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