The role of perceived social support for outcomes for the Long-Term Health Condition Hypermobile Ehlers-Danlos Syndrome

ObjectivePerceived social support typically improves outcomes in long-term health conditions, whilst social isolation and loneliness are linked to poorer outcomes and even early mortality. Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) are particularly vulnerable to social isolation due to the complex, wide-ranging and often misunderstood symptomology. Methods and MeasuresThis survey, the first high-powered investigation of its kind (n = 415 participants) to our knowledge, used validated questionnaires to investigate whether loneliness, perceived support from family and friends and dog guardianship predict health and wellbeing in hEDS. Results The results indicated that loneliness significantly negatively predicted most health and wellbeing outcomes, while perceived support from friends positively predicted some outcomes. However, perceived support from family and canine companionship were rarely significant predictors for these outcomes. ConclusionThe results indicate a need for targeted interventions to reduce loneliness and improve health and wellbeing outcomes in individuals with hEDS. Indeed, this research underscores the importance of considering loneliness and perceived support more broadly in the context of long-term health conditions.