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Seòmar agus comataidhean

Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness Month 2022

  • Submitted by: Martin Whitfield, South Scotland, Scottish Labour.
  • Date lodged: Thursday, 28 April 2022
  • Motion reference: S6M-04129

That the Parliament recognises that the month of May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month; understands that EDS is a group of heritable connective tissue disorders; notes that the body’s connective tissue provides support in skin, tendons, ligaments, blood vessels and internal organs; understands that EDS and HSD can affect people in different ways and that, for some, the condition is relatively mild while, for others, symptoms can be disabling; highlights reports that the prevalence of hypermobile EDS, the most common subtype, is estimated to be one in 5,000; notes that a 2019 study suggested that prevalence may be much higher due to underdiagnosis; understands that other subtypes are significantly rarer; believes that improvements in care for patients would benefit people who have EDS and HSD; looks forward to the publication of the Scottish Government’s Rare Disease Action Plan, which, it understands, aims to achieve the four key priorities in the UK Rare Disease Framework, and expresses its support for people in Scotland who are living with and affected by EDS and HSD.


Supported by: Karen Adam, Clare Adamson, Jackie Baillie, Jeremy Balfour, Miles Briggs, Alexander Burnett, Maggie Chapman, Foysol Choudhury, Sharon Dowey, Russell Findlay, Kenneth Gibson, Pam Gosal, Craig Hoy, Bill Kidd, Fulton MacGregor, Ruth Maguire, Paul McLennan, Stuart McMillan, Carol Mochan, Audrey Nicoll, Paul O'Kane, Colin Smyth, Alexander Stewart, Paul Sweeney, Mercedes Villalba, Sue Webber, Brian Whittle