Psychosocial functioning in the Ehlers–Danlos syndrome
Abstract
Ehlers‐Danlos Syndrome (EDS) is a group of related genetic disorders of connective tissue presenting with joint hypermobility, skin extensibility, and tissue fragility. Although the pathophysiology of EDS is increasingly understood, the psychosocial effects of having EDS have not been examined. We psychologically tested and interviewed 41 adults and 7 children with EDS. Anxiety, depression, anger, and interpersonal concerns were significantly elevated, varying from one‐quarter to one‐third of patients; over 70% had a history of some mental health care use. Psychological difficulties appear to result from chronic pain and disability, ostracism or avoidance of relationships and social activities, sexual difficulties and reproductive concerns, and frustration with the medical system. Specific types of EDS (e.g., EDS Type I) are associated with greater pain and psychological distress. Psychological intervention, prescribed with the recognition that psychiatric features are secondary to EDS, is recommended for some patients. © 1994 Wiley‐Liss, Inc.
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EDS and HSD are associated with increased risk of depression, anxiety, and interpersonal issues compared to the general population.
“EDS and HSD have been associated with increased risk of conditions such as depression and anxiety as well as interpersonal issues when compared to the general population [17–21].”
From Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review (2023) · cites this paper as [19]
Two studies including samples of all types of EDS found that pain did not differ significantly between the types.
“Two studies included samples of all types of EDS and found that pain did not differ significantly between the types.49”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [49]
Psychological distress is increased in adults with symptomatic GJH.
“Psychological distress was increased but did not exceed pathological cutoffs.49”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [49]
Psychological distress in adults with symptomatic GJH does not exceed pathological cutoffs.
“Psychological distress was increased but did not exceed pathological cutoffs.49”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [49]
In 3 studies, methodological quality was lacking.
“In 3 studies,31,49,50 methodological quality was lacking”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [49]
In a study of 44 adults and 7 children with EDS, children aged 7-12 showed features compatible with ASD such as impaired social competence (57%), internalizing problems (43%), and aberrant behaviors (29%), although no specific assessment for autism was applied.
“The results in children (aged 7–12-years-old) showed some features compatibles with ASD such as impaired social competence (57 % of the sample), internalizing problems (43%), and aberrant behaviors (29%) although no specific assessment for autism was applied in this study.”
From Autism, joint hypermobility-related disorders and pain (2018) · cites this paper as [45]
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Ortega, J., Vázquez, N., & Arberas, C. L. (2021) · Revista de la Facultad de Ciencias Médicas de Córdoba · doi:10.31053/1853.0605.v78.n1.25498
Joint hypermobility syndrome for the urogynaecologist – A narrative review
Abaza, I. A. N., Tadros, M., Lemmon, B., Bhide, A., Fernando, R., & Khullar, V. (2026) · European Journal of Obstetrics & Gynecology and Reproductive Biology · doi:10.1016/j.ejogrb.2026.114943
- Authors
- Lumley, M. A., Jordan, M., Rubenstein, R., Tsipouras, P., & Evans, M. I.
- Affiliations
- Wayne State University (US)
- UConn Health (US)
- Corresponding author
- Lumley, Mark A.
- Venue
- American Journal of Medical Genetics
- Publisher
- Wiley
- Published
- 1994-11
- Volume
- 53
- Issue
- 2
- Pages
- 149-152
- ISSN
- 0148-7299 (ISSN-L)
- 1096-8628
- OpenAlex
- W1992882474
- Cited by
- 90
- References
- 13
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 3 · 2023: 3 · 2022: 2 · 2021: 2 · 2020: 4 · 2019: 3 · 2018: 6 · 2017: 3 · 2016: 6 · 2015: 7 · 2014: 6 · 2013: 3 · 2012: 5
- FWCI
- 0.42
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Medical Genetics (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Yale University
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Keywords
- Ehlers-Danlos syndrome, psychosocial functioning, anxiety, depression, anger, interpersonal problems, chronic pain, disability, connective tissue diseases, social isolation, reproductive concerns, psychological distress, psychiatric intervention
- MeSH terms
- Adolescent, Adult, Aged, Anger, Anxiety, Child, Depression, Ehlers-Danlos Syndrome, Female, Humans, Male, Middle Aged, Pregnancy, Psychological Tests, Psychology, Social, Reproduction
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