Ehlers-Danlos Syndrome (EDS) (A Tale Of Broken Dreams)

In this video, we follow an Ehlers-Danlos Syndrome patient on her Odyssey to diagnosis. Ehlers-Danlos syndrome or EDS is a collection of collective tissue diseases that are relatively common but that are frequently overlooked in the search for a diagnosis of chronic pain syndromes. One reason is the diverse array of symptoms that the different variants of Ehlers-Danlos syndrome can cause in the human body. Rarely do we find a single syndrome in medicine that can affect the joints, the heart, the GI track, the vasculature, the brain, the spine, the bones, the eye, the blood pressure…. and the list goes on and on. This variability in presentation often causes a delay in diagnosis, and patients are frequently frustrated at providers who dismiss the severity and veracity of symptoms reported by sufferers of Ehlers-Danlos Syndromes. The most common form is the hypermobile Ehlers-Danlos Syndrome, and this is precisely the form for which there is no genetic marker to aid in the diagnosis. Ehlers-Danlos Syndromes are not simply curiosities, they are serious conditions that can lead to a lifetime of disability, joint dislocations, bowel perforations, POTS, intracranial bleeds, aortic ruptures, pelvic organ prolapses (POP), rectal prolapse, surgical complications from poor wound healing and many other serious conditions that can be avoided if Ehlers-Danlos Syndrome is diagnosed early and patients are given information on how to protect themselves and taught exercise routines that can help decrease the likelihood of permanent joint damage or life-threatening complications. Ehlers-Danlos Syndrome (EDS) is the exceptional diagnosis that deserves a higher place on our differential-diagnosis list.