I have just launched the first entries in our list of phrases that kids with Ehlers-Danlos use to describe their experience.
There are two other lists that accompany this. The first are positive things that kids say about having Ehlers-Danlos. The second are things parents noticed when their children were small.
I think that even if one parent finds this list when they google a phrase like “heavy muscles” and is able to find early physiotherapy and some answers our little research project would have been worthwhile.
You can visit Ehlers-Danlos List of Descriptive Phrases and add your own using the contact form at the bottom of the page.
