How Children & Teenagers Describe Ehlers-Danlos

This is a list of ” google search-able 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-

• “My legs are tired.”(3yrs)
• “They (legs) just need more rest.”(3yrs)
• “My legs need more food.”(3yrs & 5yrs)
• “My ankles are making me crazy.”(3yrs)
• “My ankles are crazy or wobbly.”(5yrs)
• “It’s painful all the time.”
• “I get stressed because I can’t finish things.”
• “I get sad that I can’t participate.”
• “My head feels heavy.”
• “I get thumping pains in my body.”
• “I click/dislocate all the time without notice.”
• “My legs give way and I just fall flat.”
• “I feel scared.”
• “People don’t believe me.”
• “People call me weak.”
• “I get called lazy.”
• “My muscles feel heavy.”
• “My bones feel like cement”
• “I am sick of feeling so tired.”
• “My muscles burn.”
• “My whole body hurts.”
• ”It feels like little needles here” (pointing to different parts of the body)
• “My legs feel like they are about to fall off.”
• “My body feels like it’s not sitting right.”
• “I feel old.”
• “I feel like I’m eighty.”
• “tired all over.” (7 years)
• child drew daggers on his heels knees and elbows (7 years)
• “You get tired really fast.”
• “Sometimes you feel all floppy.”
• “It’s like pushing on a bruise…only constantly and
  without the bruise”(12 years)
• It feels like my bones are bending and going to break.
• Feeling like my fingers need to click (knees, toes, wrists etc).
• Feeling very weak, like just picking up a cup would feel like my arm was about to break at some point.

Positives
This is a list of what kids with EDS have identified as the positives about having this condition.

• 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 invisible.
• 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.
• Healthy happy babies seem very floppy, ragdoll like.

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.