Helen has written in to us with a description of early indicators that her daughter was suffering with Ehlers Danlos.
When she was 1-2years old, we noticed she would want to be held but not sleep. She would just watch everything, or talk a little, but she didn’t want to get down or move around the house. She just needed to be supported bodily, but not her mind- it was still active.”
Some years ago now we launched a project to gather words and phrases children and teenagers use when telling people what it feels like to have Ehlers-Danlos.
We are also interested in hearing from parents about what they have have observed when their children were babies.
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 or statements we could set out a trail of search terms for puzzled parents to find.
The project also compiles information for professionals who want to understand more about the experience of children who have Ehlers-Danlos.
Thank you Helen– 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.