welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!
patient education

17 Things People With Ehlers-Danlos Syndrome Wish Their Doctors Knew

key information

source: The Mighty

year: 2016

authors: Erin Migdol


Though people with Ehlers-Danlos syndrome experience a wide array of symptoms and may present the condition in many different ways, most EDS “zebras” have one thing in common: frustrating experiences with doctors who don’t understand how to identify, diagnose or treat EDS. It can take years to get a diagnosis, and even then, doctors may not realize the co-morbid conditions, pain, and emotional effects of the disease.

We partnered with the Ehlers-Danlos Society to ask our Facebook communities what they wish doctors knew about EDS. In addition to their hope for doctors to educate themselves on the facts and current research about the condition, EDS patients also revealed the need for patience and compassion — qualities that can help patients feel supported and cared for by their doctors.

read more