Some years ago now I launched a project to gather words and phrases children and teenagers use when telling people what it feels like to have Ehlers-Danlos.
The project came about because parents told me it took a long time to find a diagnosis.
This gave me the idea that by blogging these terms we could set out a trail of search terms for puzzled parents to find.
The project also compiles a useful set of experiences for professionals who want to understand more about Ehlers-Danlos.
Today I am publishing another contribution to our phrases project. It comes from Sarah and it is a phrase her seven year old used.
Thank you Sarah – this is a really helpful piece of the puzzle.
If you’d like to read our phrases list or you’d like to send your own contribution please follow this link – How Children & Teenagers Describe Ehlers-Danlos.