Subjective health complaints in individuals with Ehlers-Danlos syndrome: a questionnaire study

Ehlers-Danlos syndrome (EDS) is an inherited connective tissue disorder where symptoms such as hyper mobile joints, fragile tissues, a bleeding tendency and chronic pain are frequent. Consequently, functional disability is common.

In the present study we investigated the prevalence of subjective health complaints in a Swedish EDS group. DESIGN, PARTICIPANTS AND METHOD: Members of the Swedish EDS Association were invited to respond to the questionnaire Subjective Health Complaints Inventory (SHCI). Of the 365 individuals receiving questionnaires, 250 diagnosed individuals >18 years (mean age 46.15; SD 12) responded. The overall response rate was 68% (females 89.2%; n=223).

The total number of persons reporting any health complaint was 247 (99%). The mean number of complaints was 16.1 (SD 5.7) in the whole group. The complaints reported were musculoskeletal by 246 (98%), pseudoneurological by 241 (96%), gastrointestinal by 236 (94%), allergic by 182 (73%) and influenza-like by 144 (58%) persons. Substantial complaints were reported by 240 (96%) persons. Women reported a significantly higher number of complaints, mean total SHC, and severity per complaint compared to men and the reference group; the Norwegian general population.

Swedish females with EDS have higher number of and more substantial health complaints like tiredness and different localisations of pain than the compared Norwegian general population. Musculoskeletal, pseudoneurological and gastrointestinal complaints are most frequent in individuals with the hyper mobile EDS type.