How Children & Teenagers Describe Ehlers-Danlos

This is a list of ” google searchable terms” that we are putting together.  We hope that parents might find this and realise that their child may have a condition that can be helped with appropriate early therapy.

Our list is in three parts – things the kids tell us, the positives they can identify and things parents might notice when their children are young.  Please feel free to add to it using the form below.

Here is a list of how kids describe how their body feels and how they experience the condition-

  • painful all the time
  • get stressed because I can’t finish things
  • sad that I can’t participate
  • my head feels heavy
  • thumping pains in my body
  • click/dislocate all the time without notice
  • my legs give way and I just fall flat
  • scared
  • people don’t believe me
  • people call me weak
  • get called lazy
  • my muscles feel heavy
  • My bones feel like cement
  • I am sick of feeling so tired.”

Positives

  • Can scratch where other people can’t
  • Comforting to rub my own skin
  • First to get parents attention
  • Priority seating at home
  • I blend in – this condition is invisable
  • I get some good days
  • I get time off school
  • Love walking it out

Parents might notice that their children-

  • Can’t hold pencil.
  • Un-coordinated at sport.
  • Can’t sit still.

This is our work in progress list.  Can you please send us phrases your child uses or things you observed that alerted you to the problem and we will add it to our list.

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