Hidden joint disorder leaves many in pain and undiagnosed for decades

Vivienne Duval’s story illustrates how hypermobility can masquerade as unrelated health issues like fatigue, digestive trouble and chronic pain. After recognizing symptoms from an online video, she was confirmed to have hypermobile joints, a finding echoed by many who remain undiagnosed for years. A University of Edinburgh study estimates hundreds of thousands in the UK live with Hypermobility Spectrum Disorders or hypermobile Ehlers-Danlos, with an average diagnostic delay of 19 to 21.7 years.

The lack of a specific NICE clinical pathway creates a postcode-based disparity in assessment, and women appear to be more frequently impacted. Only a minority of diagnosed patients report that their GP initiated management, and few have access to specialists. Clinicians stress the need for physiotherapy and multidisciplinary support, while calling for greater awareness and governmental recognition of the condition.