Cited by 90Connective tissue disorders researchMusculoskeletal pain and rehabilitationPsychosomatic Disorders and Their Treatments

Psychosocial functioning in the Ehlers–Danlos syndrome

Lumley, Mark A., Jordan, Margaret, Rubenstein, Ralph, Tsipouras, Petros, Evans, Mark I.·1994·American Journal of Medical Genetics

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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Registry

Crossref · 10.1002/ajmg.1320530206

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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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