Profiling hypermobile Ehlers-Danlos syndrome (hEDS): factors in health and wellbeing with chronic conditions and opportunities for improving self-management

Factors affecting physical and psychological outcomes for those with chronic conditions are complex, extending beyond medical symptomology to numerous demographic influences. Living with hypermobile Ehlers-Danlos Syndrome (hEDS) is characterised by diagnostic delay and numerous comorbidities, known to impact wellbeing. This high-powered study (<i>n</i> = 415 participants) investigates the mediating effect of diagnosis, comorbidity and age on wellbeing, and provides insights into the effects of the latest hEDS reclassification. Validated measures were used to assess quality of life, perceived social support, physical health, fatigue, anxiety, pain and loneliness. Results indicated worse outcomes for those diagnosed after the reclassification and for those with higher numbers of comorbidities. Conversely, improved outcomes were associated with older age. Findings were supported by insights captured in participants’ demographic profiles where a wider breadth of comorbidities were recorded than previously identified. Meanwhile, there was no evidence of a change in the route to diagnosis over time, and data showed ongoing limitations in terms of options for effective treatment. These findings point to the potential effectiveness of self-management techniques for improving well-being with chronic conditions and highlight the need for improved awareness of hEDS and its management amongst primary care practitioners. Hypermobile Ehlers-Danlos Syndrome (hEDS) is a complex, debilitating condition where rehabilitation is often hampered by protracted diagnoses, multiple comorbidities and limited treatment options.Findings support evidence that self-management is influential in improving outcomes.Greater awareness of hEDS at primary care level is urgently required both to improve diagnosis and enable opportunities for rehabilitation through self-management. Hypermobile Ehlers-Danlos Syndrome (hEDS) is a complex, debilitating condition where rehabilitation is often hampered by protracted diagnoses, multiple comorbidities and limited treatment options. Findings support evidence that self-management is influential in improving outcomes. Greater awareness of hEDS at primary care level is urgently required both to improve diagnosis and enable opportunities for rehabilitation through self-management.