Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) in Scotland: A Scrapbook of Lived Experiences

Kathryn Berg; Dervil Dockrell; Rose Matheson; Sally Ross; Scott Winchester; Joanna Sinclair; Stephanie Thomson; Shae Morgon; Rebecca King; Ruth Mutch; Emma Bennon; Alice Dickinson; Nathan Corr; Ian Willis; Amy Hood; Susan McGill; Fiona Brown; Francesca Scappaticcio; Judith Gilbert; Jennifer Jones; Lucy Millar; Carina McIntosh; Maria Goldie; Anne Sutherland; Michele Goldie

doi:10.2218/ED.9781912669851

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) in Scotland: A Scrapbook of Lived Experiences

Authors

Kathryn Berg, University of Edinburgh; Dervil Dockrell, University of Edinburgh; Rose Matheson, © Rosesusitation; Sally Ross; Scott Winchester; Joanna Sinclair; Stephanie Thomson; Shae Morgon; Rebecca King; Ruth Mutch; Emma Bennon; Alice Dickinson; Nathan Corr; Ian Willis; Amy Hood; Susan McGill; Fiona Brown; Francesca Scappaticcio; Judith Gilbert; Jennifer Jones; Lucy Millar; Carina McIntosh; Maria Goldie; Anne Sutherland; Michele Goldie

DOI: https://doi.org/10.2218/ED.9781912669851

Keywords:

Hypermobility, Ehlers-Danlos Syndromes, Lived Experience, Scotland, Pathway of Care, Participatory Research

Synopsis

This scrapbook was created by participants of the ‘Translating Research Into Change’ event at the Institute of Genetics and Cancer, University of Edinburgh, and offers the reader a look into the real lived experiences of people who live with a diagnosis of hypermobile Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorders in Scotland.