Current research opportunities

Summary

This study aims to understand how symptoms experienced by people living with hEDS and HSD affect confidence in participating and maintaining exercise, with the goal of improving clinician understanding and awareness.

Summary

This study will explore the lived experiences of people getting a diagnosis of hEDS and HSD and the lived experiences of accessing treatment for their condition in the United Kingdom.

Summary

People with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) often report having their symptoms misunderstood, minimised, or dismissed. While these experiences have been explored in healthcare settings, very little research has examined how they affect participation in sport. This study aims to investigate whether experiences of invalidation are associated with lower psychological safety and reduced enjoyment in sporting environments. The findings may help improve awareness of the challenges faced by athletes with hEDS/HSD and inform more supportive, inclusive coaching and sporting practices.

The study aims to recruit approximately 100 participants aged 18 years and over.

Researcher Lana Hayes

Summary

This study is to explore the reasoning behind behavioural barriers to physical activity that have been found within previous quantitative research for this with hEDS. The study will focus on all levels of PA and will investigate both those who are diagnosed and those who are on the pathway to being diagnosed due to the long wait times in the UK.