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Ehlers-Danlos syndrome, hypermobility type: A characterization of the patients' lived experience.
Am J Med Genet A 2013; 161A(12):2981-8AJ

Abstract

Hypermobility type Ehlers-Danlos syndrome (EDS-HT) is an inherited connective tissue disorder clinically diagnosed by the presence of significant joint hypermobility and associated skin manifestations. This article presents a large-scale study that reports the lived experience of EDS-HT patients, the broad range of symptoms that individuals with EDS-HT experience, and the impact these symptoms have on daily functioning. A 237-item online survey, including validated questions regarding pain and depression, was developed. Four hundred sixty-six (466) adults (90% female, 52% college or higher degree) with a self-reported diagnosis of EDS-HT made in a clinic or hospital were included. The most frequently reported symptoms were joint pain (99%), hypermobility (99%), and limb pain (91%). They also reported a high frequency of other conditions including chronic fatigue (82%), anxiety (73%), depression (69%), and fibromyalgia (42%). Forty-six percent of respondents reported constant pain often described as aching and tiring/exhausting. Despite multiple interventions and therapies, many individuals (53%) indicated that their diagnosis negatively affected their ability to work or attend school. Our results show that individuals with EDS-HT can experience a wide array of symptoms and co-morbid conditions. The degree of constant pain and disability experienced by the majority of EDS-HT respondents is striking and illustrates the impact this disorder has on quality of life as well as the clinical challenges inherent in managing this complex connective tissue disorder.

Authors+Show Affiliations

Division of Cardiology, Johns Hopkins Hospital, Baltimore, Maryland.No affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

24254846

Citation

Murray, Brittney, et al. "Ehlers-Danlos Syndrome, Hypermobility Type: a Characterization of the Patients' Lived Experience." American Journal of Medical Genetics. Part A, vol. 161A, no. 12, 2013, pp. 2981-8.
Murray B, Yashar BM, Uhlmann WR, et al. Ehlers-Danlos syndrome, hypermobility type: A characterization of the patients' lived experience. Am J Med Genet A. 2013;161A(12):2981-8.
Murray, B., Yashar, B. M., Uhlmann, W. R., Clauw, D. J., & Petty, E. M. (2013). Ehlers-Danlos syndrome, hypermobility type: A characterization of the patients' lived experience. American Journal of Medical Genetics. Part A, 161A(12), pp. 2981-8. doi:10.1002/ajmg.a.36293.
Murray B, et al. Ehlers-Danlos Syndrome, Hypermobility Type: a Characterization of the Patients' Lived Experience. Am J Med Genet A. 2013;161A(12):2981-8. PubMed PMID: 24254846.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Ehlers-Danlos syndrome, hypermobility type: A characterization of the patients' lived experience. AU - Murray,Brittney, AU - Yashar,Beverly M, AU - Uhlmann,Wendy R, AU - Clauw,Daniel J, AU - Petty,Elizabeth M, Y1 - 2013/11/06/ PY - 2012/07/27/received PY - 2013/09/16/accepted PY - 2013/11/21/entrez PY - 2013/11/21/pubmed PY - 2014/7/6/medline KW - Ehlers-Danlos syndrome KW - Type III KW - chronic pain KW - connective tissue disorders KW - disability KW - hypermobility KW - joint laxity KW - lived experience SP - 2981 EP - 8 JF - American journal of medical genetics. Part A JO - Am. J. Med. Genet. A VL - 161A IS - 12 N2 - Hypermobility type Ehlers-Danlos syndrome (EDS-HT) is an inherited connective tissue disorder clinically diagnosed by the presence of significant joint hypermobility and associated skin manifestations. This article presents a large-scale study that reports the lived experience of EDS-HT patients, the broad range of symptoms that individuals with EDS-HT experience, and the impact these symptoms have on daily functioning. A 237-item online survey, including validated questions regarding pain and depression, was developed. Four hundred sixty-six (466) adults (90% female, 52% college or higher degree) with a self-reported diagnosis of EDS-HT made in a clinic or hospital were included. The most frequently reported symptoms were joint pain (99%), hypermobility (99%), and limb pain (91%). They also reported a high frequency of other conditions including chronic fatigue (82%), anxiety (73%), depression (69%), and fibromyalgia (42%). Forty-six percent of respondents reported constant pain often described as aching and tiring/exhausting. Despite multiple interventions and therapies, many individuals (53%) indicated that their diagnosis negatively affected their ability to work or attend school. Our results show that individuals with EDS-HT can experience a wide array of symptoms and co-morbid conditions. The degree of constant pain and disability experienced by the majority of EDS-HT respondents is striking and illustrates the impact this disorder has on quality of life as well as the clinical challenges inherent in managing this complex connective tissue disorder. SN - 1552-4833 UR - https://www.unboundmedicine.com/medline/citation/24254846/Ehlers_Danlos_syndrome_hypermobility_type:_A_characterization_of_the_patients'_lived_experience_ L2 - https://doi.org/10.1002/ajmg.a.36293 DB - PRIME DP - Unbound Medicine ER -