Ehlers-Danlos syndrome

Early patient education, including risk awareness, and advice on physical conditioning may help prevent future injury and development of chronic pain syndrome. Avoiding contact sports and certain physically demanding occupations (e.g., nursing, professional dancing, heavy manual labor) will also help prevent injury and the onset of chronic pain.

All patients (and/or parents) should be provided with detailed information regarding the disorder. Inheritance patterns should be explained and at-risk family members identified. The outcome and natural history of the particular EDS subtype should be discussed. Advising patients with hypermobile EDS to avoid having children is not desirable; encouraging them to be alert to childhood and adolescent symptoms is. Patients and their families should also be provided with information on available support groups and other such resources. Ehlers-Danlos Society Opens in new window