We have had another contribution to our collection of phrases children use to describe how Ehlers-Danlos makes their body feel.
This set were sent in by Tina who has a three year old with EDS Hypermobility.
“My legs are tired”
“They (my legs) just need more rest”
“My legs need more food”
“My ankles are making me crazy”
Thanks for sending this in Tina. Hopefully this post will be found by another parent looking online for clues about what might be happening with their child.
Ehlers-Danlos is not very well known in the medical community and children can miss out on early diagnosis.
To read the full set of contributions so far – go to What Kids Say About Ehlers-Danlos.
If you would like to contribute to our ongoing research into what kids say about having Ehlers-Danlos use the reply form below. It would be great to hear from you.