I’ve just published some new additions to our Ehler-Danlos Descriptive Phrases List. These are words children of different ages use to describe how their body feels.
There are a couple of reasons for putting together this list.
If we publish the phrases as a blog post heading it means they become indexed by the search engines. This means that they might be found by a parent somewhere who is working to solve the mystery about why their own child has strange symptoms.
This list is also a validation for children and parents who live with Ehlers-Danlos every day.
This list might be helpful to extended family, teachers or medical folk who wish to understand more about Ehlers-Danlos from the perspective of a young child.
Here is Karen’s email about her daughter.
“My 10 year old daughter uses phrases like: “My whole body is jelly, I just can’t get up” or “My leg’s have turned to jelly and they won’t hold me”
Some of her sad phrases are: “No body understands what it’s like to be me, I feel like a granny”.
Things we noticed when she was around 3 years was that she would always want to be in the stroller, couldn’t keep up with her friends and sister, wanted to be carried even at the age of 5 years.
She could only walk very short distances before she would cry and want to sit down. At 5 & 6 she would say I wish I still had a stroller then I could go further. I hope this helps others…” Karen
Thanks to Karen for taking the time to add to our research. Please feel welcome to send in your own contribution. I’d love to hear from you.