Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study

Abstract

The results highlight the significant psychosocial impact on participants' lives. Coping approaches identified included acceptance, building social networks, learning about joint hypermobility, and adapting activities. Physiotherapists supported regular exercise. Further research should consider potential interventions to improve information provision, address psychological support, and increase awareness of hypermobility among healthcare professionals.Implications for rehabilitationParticipants who had help from family members to complete activities described guilt and shame, highlighting the need for a greater rehabilitation focus on maintaining independence.Difficulties with sexual relationships due to prolapse or erectile dysfunction, and associated anxieties have indicated a need for greater awareness of these issues within primary care.The provision of reliable information and materials is vital, both for healthcare professionals and patients, to reduce misinformation and fear.Physiotherapists with knowledge of Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome hypermobility type were cited as sources of support and hope, which helped people to cope with and manage their condition.