摘要 : In both community care and across a broad range of hospital specialties, many healthcare professionals (nurses, midwives, physical and other therapists, psychologists, and doctors) will likely attend to people with Ehlers-Danlos s... 展开 In both community care and across a broad range of hospital specialties, many healthcare professionals (nurses, midwives, physical and other therapists, psychologists, and doctors) will likely attend to people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). The belief that EDS is rare or ultra-rare is true for several forms of the syndrome, but increasingly the hypermobile type of EDS (hEDS) is thought more common, and HSD (a population previously described within joint hypermobility syndrome prior to the 2017 nosology changes; Castori et al., 2017; Tinkle et al., 2017) much more common. Together the prevalence of hEDS and HSD is likely greater than 1 in 500 in the general population (Demmleretal., 2019), and a common presentation in general musculoskeletal clinics (Grahame & Hakim, 2006). Yet often the journey to diagnosis and treatment is challenging for patients, who may receive no diagnosis, or misdiagnoses. In addition, misconceptions that the issues are solely mental health concerns are commonly reported. Too often there is more than a decade delay in diagnosis, and the negative impact on quality of life from living with under-managed disease is significant (Bell & Pearce, 2021; Berglund, Pettersson, Pigg, & Kristiansson, 2015; Castori, Camerota, Celletti, Grammatico, & Padua, 2010; Demmler et al., 2019; Mu et al., 2019). 收起