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How to Help Schools Understand Ehlers Danlos Syndrome

key information

source: Cheetahs In My Shoes

year: 2015

authors: Jenny


As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something incredibly close to it, if the Doctors could just stop arguing and make their minds up) and having been a pupil at school with EDS (not that we knew that’s what it was at the time) one of the most frequent questions I both ask myself and see being asked is how to help schools understand Ehlers Danlos Syndrome better.

I think one of the most important things that we forget, whether we’re the student or the parent, is that if our children are in school, they are not the only one in their class. Written down it seems so logical, but caught up in the emotional and physical aspects of EDS it’s very easy to lose that perspective.

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