I’ve just had an email from Tracey who has sent a sentence that her son has used to talk about life with EDS.
He started saying this around the age of seven and is now eleven years old.
For some time now we have been collecting a set of phrases from children and teenagers for the Ehlers-Danlos Descriptive Phrases Project.
This is another very moving sentence from a brave young person living with Ehlers-Danlos. He asks his mother;
“What does it feel like to never be in pain?”
If you have a child with this condition please get in touch.
We’d love to record the words they use to describe living with this challenging condition.
It may help other families and health workers gain a better understanding of how EDS is experienced by young people.
You can read our full list of descriptive words at How Children and Teenagers Describe Ehlers-Danlos.