The Role of Social Support in Helping People with EDS Manage Their Condition

The Ehlers-Danlos syndromes (EDS) are complicated, multisystemic disorders that can impact almost every aspect of an individual’s life and severely affect functioning. Research into optimal long-term management of EDS is still sparse and recommended medical treatments are largely based upon the clinical opinions of healthcare providers. Social support is linked to coping with adversities such as chronic health conditions, and has a relationship with health-related quality of life. This qualitative study examined the role of support in optimal management of EDS. Five participants with EDS were interviewed, and thematic analysis was carried out. Four themes relating to disparate sources of support emerged: community incorporated personal or face-to-face support (e.g. spouse, family, friends, and peers). Medical support included specific professionals and types of care available to people with EDS. The role of self-support included and focused on resilience and how support helps development of resilience. The results of this study suggest that external support can facilitate the development of resilient behaviours and attitudes in individuals with EDS, which enable better management of their condition. Interventions that incorporate appropriate, multidisciplinary, medical care with the goals of improving individuals’ access to support, such as information and peer support, could enable better management of EDS. Optimal management of EDS is likely to result in better HrQoL and reduce healthcare-related expenditure associated with treatment of EDS