The Ehlers-Danlos syndrome is a group of heritable disorders of connective tissue presenting with joint laxity, skin extensibility and tissue fragility. Many individuals with Ehlers-Danlos appear to suffer from chronic joint and musculoskeletal pain. The objectives of this study were to 1) document the presence of pain, 2) define the nature of the pain, and 3) catalogue the different methods people have been using to control their pain. Questionnaires were mailed out through the Ehlers-Danlos National Foundation. In addition, 13 patients were enrolled in the study and completed questionnaires and interviews at the University of Connecticut. Data is currently being analyzed and several articles are being written for publication.
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