Some time ago I started a list of comments from children who had Ehlers-Danlos in the hope that that list would lead to early diagnosis for other children. I have had several emails and I have been adding to the list. Here is the latest comment sent to us. “This is great information for me. […]
Archive | Ehlers-Danlos Descriptive Phrases
Ehlers-Danlos List of Descriptive Phrases
I have just launched the first entries in our list of phrases that kids with Ehlers-Danlos use to describe their experience. There are two other lists that accompany this. The first are positive things that kids say about having Ehlers-Danlos. The second are things parents noticed when their children were small. I think that even […]
“My Muscles Feel Heavy”-How Children Describe Ehlers-Danlos
Children with Ehlers-Danlos or Hypermobility Disorder struggle to put into words how they are feeling. This morning at our Saturday Jointpainrelief group a couple of the mothers talked about phrases their children used. Here is a few- “My bones feel like cement.” “My muscles feel heavy.” “I am sick of feeling so tired.” These children […]