CE: Nursing Management of Patients with Ehlers-Danlos Syndrome

Am J Nurs. 2015 Jul;115(7):38-46; quiz 47-8. doi: 10.1097/01.NAJ.0000467274.82951.57.


Ehlers-Danlos syndrome (EDS), a hereditary connective tissue disorder, has historically been misunderstood and underdiagnosed by health care providers. Because of the high degree of phenotypic variability, patients are often correctly diagnosed only after years of seemingly unrelated but debilitating injuries and illnesses. Specific genetic mutations have been identified for some, but not all, EDS types; patients presenting with a high index of suspicion should be referred to a geneticist. As awareness and recognition of the syndrome improve, nurses are increasingly likely to care for patients with EDS. This article gives a brief overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients' quality of life.

Publication types

  • Review

MeSH terms

  • Adult
  • Child
  • Ehlers-Danlos Syndrome / diagnosis
  • Ehlers-Danlos Syndrome / genetics
  • Ehlers-Danlos Syndrome / nursing*
  • Ehlers-Danlos Syndrome / physiopathology
  • Humans
  • Patient Care Management / methods
  • Patient Care Management / organization & administration*
  • Quality of Life*