Ehlers Danlos Syndrome

Motion Text

That this House commends the tireless campaigning of EDS UK to raise awareness about hypermobile Ehlers Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD); recognises that these multisystem conditions are often undiagnosed for years, leaving patients to suffer a litany of seemingly unconnected symptoms; highlights that this means that those with hEDS/HSD are often left without adequate support or care to manage their symptoms, which can be devastating; underlines that hEDS/HSD ought not be called rare but rather a realistic possibility; celebrates the work of Dr Reinhold in Winchester to develop the RCGP EDS Toolkit which is available worldwide to support medical practitioners to recognise hEDS/HSD earlier; urges the Government to promote this toolkit as a means of raising awareness about EDS; and calls on the Government to meet with EDS UK to discuss next steps.