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

Ehlers-Danlos syndrome (EDS) is an inherited connective tissue disorder tha t 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 t o investigate the impact on functional health status by means of the Sickne ss Impact Profile (SIP). Seventy-seven individuals, members of the Swedish EDS Association, completed 2 mailed questionnaires. The most frequent sympt oms were related to activity, e.g., joint problems (75%), to pain (71%), an d 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 SI P score 1.3. Women with EDS reported a better functional health status than females with rheumatoid arthritis (overall SEP score 13.9 versus 21.4). In comparison with women with fibromyalgia, the EDS females rated their funct ional health status as worse on the physical dimension (p <0.05) and the su bscale 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, asse ssed, and evaluated in healthcare.