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Clinical characteristics of patients with hypermobile type Ehlers–Danlos syndrome (hEDS) and generalized hypermobility spectrum disorders (G-HSD): an online survey

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Abstract

To examine the perspective of individuals with Hypermobile Ehlers–Danlos Syndrome (hEDS) and Generalized Hypermobility Spectrum Disorder (G-HSD), needed to help identify priorities and improve the lives of people living with these conditions. We conducted an online survey between November 2021 and January 2023. Participants were recruited through the Ehlers-Danlos Society’s Research Surveys website. We obtained 483 responses and 396 were analyzed. 80% of the survey’s respondents were individuals with hEDS, 90% were females, 30% were between 21 and 30, and 76% lived in North America, with 85% of the participants living in North America indicated being White or European American. Participants reported exercising from none to less than three times per week, with no physical therapy treatment. Ninety-eight percent of participants reported pain mainly at the neck (76%), lower (76%) and upper back (66%), knees (64%), shoulders (60%), and hips (60%). Approximately 80% of participants reported fatigue, joint hypermobility, joint instability, interference with daily activities, gastrointestinal problems, orthostatic hypotension, muscle weakness, and emotional distress. About 60% of respondents indicated walking issues, balance issues, and reduced joint proprioception. Nearly 40% of participants reported pelvic floor dysfunction and cardiovascular problems. Participants with hEDS and G-HSD reported pain on an average (SD) of 6.4 (± 1.3) and 5.9 (± 1.5) days in a typical week, respectively. People with hEDS and G-HSD desperately need more effective treatment options, a better diagnostic process, and education among health care providers.

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Data availability

The datasets used and analyzed during the current study are available from the corresponding author upon reasonable request.

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Acknowledgements

The authors thank Anne Marie Buford, DPT; Eric Lopez, DPT; and Ashley Murray, DPT, for their help with the systematic literature review used in this study and all the patients who responded to the survey.

Funding

The Linda Crane Research Grant, 2019, from the Florida Physical Therapy Association funded this study.

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Authors and Affiliations

  1. School of Physical Therapy and Rehabilitation Sciences, Morsani College of Medicine, University of South Florida, Tampa, FL, USA

    Patricia Teran-Wodzinski

  2. Department of Internal Medicine and Office of Research, Morsani College of Medicine, University of South Florida, Tampa, FL, USA

    Ambuj Kumar

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Contributions

Conception and design of the work, PTW and AK; acquisition of data for the work, PTW and AK; analysis of data for the work, PTW and AK; interpretation of data, PTW and AK; drafting the work, PTW and AK; reviewing it critically for important intellectual content, PTW and AK. According to the ICMJE authorship criteria, the authors have fulfilled the requirements of providing final approval for the version to be published and agree to be accountable for all aspects of the work, including the investigation and resolution of any questions regarding the accuracy or integrity of the manuscript.

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Correspondence to Patricia Teran-Wodzinski.

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Conflict of interest

The authors declare that they have no conflicts of interest.

Ethics approval

This study was approved by the University of South Florida Institutional Review Board on 09.19.2019 (IRB# Pro00041250). All procedures were performed following the institutional and national ethical standards.

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Informed consent was obtained from all participants involved in the study.

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Teran-Wodzinski, P., Kumar, A. Clinical characteristics of patients with hypermobile type Ehlers–Danlos syndrome (hEDS) and generalized hypermobility spectrum disorders (G-HSD): an online survey. Rheumatol Int 43, 1935–1945 (2023). https://doi.org/10.1007/s00296-023-05378-3

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