Stretched beyond the limit: Well-being and functioning in patients with Ehlers-Danlos syndrome and other hypermobility syndromes

Abstract

This chapter describes the somatic, psychological, and social impact of Ehlers-Danlos syndrome (EDS). Research indicates that pain and fatigue are common problems in EDS. In addition, patients may fear damage to their joints, skin, and other organs; progressive disability; and even death. Other psychological and social dilemmas or challenges often occur, including whether or not to have a child, finding or keeping work that is commensurate with abilities and interests, altered roles in the family, a lack of understanding by others in one’s social environment, and obtaining appropriate health care. Yet patients vary widely with respect to the severity of the disease and its impact on their psychological, social, and physical functioning and well-being; individual assessment is needed. It is probably optimal to have one physician manage each patient and coordinate the many aspects of his or her care. Patients should have access to education, counseling, and multidisciplinary interventions aimed at reducing the adverse consequences of the disease