A new UK study suggests people with hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome can face very long waits for diagnosis, potentially up to 21 years. The research, led by the University of Edinburgh and described as the largest study of its kind in the UK, involves more than 2,000 participants. It reports that awareness of hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) among British healthcare professionals is low. Participants describe symptoms that can include chronic pain and partially dislocated joints, highlighting the impact while diagnosis is delayed. The study’s findings point to a gap between patients’ health needs and clinicians’ knowledge, which may contribute to extended time to recognition and referral. The reports do not specify which healthcare pathway drives the delay or the exact average wait time across different regions, but they indicate that some patients experience extreme delays. The study’s results are presented as evidence supporting the need for improved awareness and assessment within healthcare services.