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.
Firstly, thank you for all your hard work and support over the years.
Please feel free to join us in building a helpful website. You can contribute from either a professional or personal perspective. Your insights will be highly valued.