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J Clin Rheumatol. 2001 Oct;7(5):308-14.

Symptoms and functional health status of individuals with Ehlers-Danlos syndrome (EDS).

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Department of Nursing, Karolinska Institutet, Stockholm, Sweden.


Ehlers-Danlos syndrome (EDS) is an inherited connective tissue disorder that can have a substantial impact on daily life. The aims of this study were to describe the symptoms reported in a group of individuals with EDS and to investigate the impact on functional health status by means of the Sickness Impact Profile (SIP). Seventy-seven individuals, members of the Swedish EDS Association, completed 2 mailed questionnaires. The most frequent symptoms were related to activity, e.g., joint problems (75%), to pain (71%), and to skin/tissue (52%). Pain was reported by 37 individuals (48%) as their most severe symptom. The SIP results showed an overall mean score of 13.0 (females 13.9, males 5.6), compared with a Swedish reference group with a SIP score 1.3. Women with EDS reported a better functional health status than females with rheumatoid arthritis (overall SIP score 13.9 versus 21.4). In comparison with women with fibromyalgia, the EDS females rated their functional health status as worse on the physical dimension (p <0.05) and the subscale home management (p <0.05), and as better on the subscale work (p <0.05). Impact of EDS on the individual's daily life needs to be acknowledged, assessed, and evaluated in healthcare.

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