How Children and 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-

Parent Early Observation – Age 1-2:

“She didn’t sleep much as a baby.”

“When she was 1-2 years old, we noticed she would want to be held but not sleep.  She would just watch everything, or talk a little, but she didn’t want to get down or move around the house.  She just needed to be supported bodily, but not her mind- it was still active.”

“Slept 12-13 hours as a toddler and still now at 7.”

Children and parents speak:

• “My legs are tired.”(3 yrs)
• “I can’t walk anymore, I can’t use my legs (2/3 yrs)
• “My legs feel fizzy, my foot won’t stretch under there” ( 2/3 yrs)
• “They (legs) just need more rest.”(3 yrs)
• “My legs need more food.”(3 yrs & 5 yrs)
• “My ankles are making me crazy.”(3 yrs)
• … always want to be in the stroller, couldn’t keep up with her friends (3 yrs)
• Crying in pain and tiredness.
• Sat like a flamingo at the dinner table to stabilise herself.
• Constantly hyperextended her legs between the baby seat and the back of the front seat to stretch her muscles.
• “My ankles are crazy or wobbly.”(5 yrs)
• “still wants to be carried” (5 yrs).
• “could only walk very short distances before she would cry and want to sit down.
• At 5 & 6 she would say I wish I still had a stroller then I could go further. (5 & 6 yrs)
• “I’m trying but my body doesn’t do what I tell it to. “(7 yrs)
• 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”(7 yr)
• “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 yrs)
• Gets frustrated very easily. “Why can’t I run as fast as everyone else?” (7 yrs sports day.)
• “What does it feel like to never be in pain?”(7-10yrs)
• “My whole body is jelly, I just can’t get up” (10 yrs)
• “My leg’s have turned to Jelly and they won’t hold me” (10 yrs)
• “No body understands what it’s like to be me, I feel like a granny” (10 yrs)
• “It’s like my legs are being sat on and crushed by an elephant” (10 yrs)
• “You get tired really fast.”
• “Sometimes you feel all floppy.”
• “It’s like pushing on a bruise…only constantly and without the bruise” (12 yrs)
• 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.
• “I can tell you that EDS never gives you a day completely pain free. Flare ups are like a chain reaction. Once one joint starts hurting others follow until your whole body hurts and you are hard pressed to get relief. Your friends don’t understand and just think that you are a baby. How can you explain something to someone who you don’t completely understand yourself and cannot see?” (17yrs)

Positives

Things at school that have helped:
– slope board,
– correct size chair and desk,
– not sitting on the floor,
– pencil grip,
– fine and gross motor exercise.
– OT and Physio assessments regularly

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.
• Children prefer to be carried or stay in a stroller.
• Can’t keep up with their friends.

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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