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15 Things Adults With Ehlers-Danlos Syndrome Wish Their Parents Had Known

key information

source: The Mighty

year: 2017

authors: Erin Migdol


Few people are familiar with Ehlers-Danlos syndrome (EDS) before knowing someone with the condition, so many people with EDS grew up with parents who didn’t fully understand the cause of their child’s pain and co-morbid conditions. Unfortunately, parents aren’t typically taught about the signs of EDS, so dislocations may be mistaken for “clumsiness,” and chronic pain may be innocently seen as “growing pains,” when nothing could be further from the truth.

Please know we don’t mean for this post to be one of blame. These parents did the best they could. Instead we hope that learning from these past experiences, parents today can learn how to best support their child with EDS. To do this, we asked our Mighty EDS community to share what they wish their parents had known about their condition when they were growing up.

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