Thanks to Alison for sending in her seven year olds descriptive words for what it feels like to have EDS.
When writing at school “I feel like my hand is going to just break off my arm” and when his body/legs/arms hurt ” I feel like my whole body is just going to collapse on the floor”
You can read our full list of descriptive words at How Children and Teenagers Describe Ehlers-Danlos.
If you have a child with this condition please get in touch. We’d love to record the words they use to describe their experience.