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

Abstract

Purpose

Little attention has been paid to psychosocial factors in Joint Hypermobility Syndrome and Ehlers–Danlos Syndrome (hypermobility type). This study sought to identify the psychosocial impact by examining participants’ lived experiences; and identify characteristics of effective coping.

Materials and methods

Adults with Joint Hypermobility Syndrome and Ehlers–Danlos Syndrome (Hypermobility Type) were invited to discuss their own lived experiences and the impact of the condition. All met recognized criteria for clinically significant joint hypermobility, and had a self-confirmed diagnosis. The transcripts were coded and analyzed using inductive thematic analysis.

Results

Seventeen participants (14 women, 3 men) purposively selected to broadly represent different genders, ages and ethnicities. Analysis identified five key themes: healthcare limitations, a lack of awareness of Joint Hypermobility, and Ehlers–Danlos Syndrome (Hypermobility Type) among healthcare professionals; a restricted life; social stigma; fear of the unknown; and ways of coping.

Conclusions

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 rehabilitation

• Participants 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.

Keywords:

• Ehlers–Danlos syndrome
• Joint laxity
• familial
• joint instability
• psychosocial support systems
• qualitative research

Acknowledgements

We would like to thank all the participants for sharing their experiences and insights, and our Patient Research Partner Sue Harris, who gave valuable awareness relating to her own experiences as a patient with JHS. We would also like to gratefully acknowledge the assistance of the Hypermobility Syndromes Association and Ehlers–Danlos Support UK for their support with participant recruitment.

Disclosure statement

The authors report no declarations of interest.