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Chamber and committees

New Care Pathways for People Living with Ehlers-Danlos Syndromes

  • Submitted by: Michael Marra, North East Scotland, Scottish Labour.
  • Date lodged: Thursday, 19 September 2024
  • Motion reference: S6M-14548
  • Current status: Achieved cross-party support

That the Parliament understands that Ehlers-Danlos syndromes (EDSs) are part of the inherited connective tissue disorders, and are mainly characterised by joint hypermobility, skin hyperextensibility and tissue fragility; further understands that these syndromes are classified into 13 subtypes and present great clinical and genetic heterogeneity; believes that the most common is the hypermobile Ehlers-Danlos syndrome (hEDS), the diagnosis of which remains clinical; further believes that there is currently no pathway of care for adults living with hEDS or hypermobility spectrum disorder (HSD) in Scotland or the UK, and understands that people living with these conditions, including in the North East Scotland region, report feeling dismissed by healthcare professionals, with time to diagnosis reportedly currently averaging two decades; recognises the work of volunteers and campaigners at The Ehlers-Danlos Support UK, which was set up in 1987 to support, advise and inform those living with Ehlers-Danlos syndromes, and notes the encouragement for the Scottish Government and parliamentarians to engage fully with the issue, and to work with the NHS, researchers and patient representatives to deliver the care pathways that people living with Ehlers-Danlos syndromes need.


Supported by: Clare Adamson, Jackie Baillie, Jeremy Balfour, Sarah Boyack, Miles Briggs, Alexander Burnett, Foysol Choudhury, Katy Clark, Bob Doris, Sharon Dowey, Tim Eagle, Annabelle Ewing, Kenneth Gibson, Pam Gosal, Ross Greer, Dr. Sandesh Gulhane, Patrick Harvie, Monica Lennon, Fulton MacGregor, Carol Mochan, Paul O'Kane, Emma Roddick, Alex Rowley, Graham Simpson, Paul Sweeney, Michelle Thomson, Sue Webber, Annie Wells, Tess White, Brian Whittle