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Ehlers-Danlos Syndrome Awareness Month

Motion Number: S6M-13095

Lodged By: Michael Marra

Date Lodged: 03/05/2024

Title: Ehlers-Danlos Syndrome Awareness Month

Motion Text:

That the Parliament recognises May 2024 as Ehlers-Danlos Awareness Month; 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), whose diagnosis remains clinical; understands that, after other possible conditions are excluded, a diagnosis of hypermobility spectrum disorders (HSD) may be made, and that, although most commonly characterised by joint hypermobility, skin flexibility and tissue fragility, many patients with hEDS/HSD report a much wider range of co-occurring conditions and symptoms, which can be just as debilitating as these connective tissue manifestations, such as pain, fatigue, dysautonomia, gastrointestinal disorders, anxiety and respiratory symptoms; believes that there is currently no pathway of care for adults living with hEDS/HSD in Scotland or the UK, and that people living with these conditions report feeling dismissed by healthcare professionals, with time to diagnosis reportedly currently averaging two decades, and encourages ministers 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 need.



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