I’ve just had an email from Tracey who has sent a sentence that her son has used to talk about life with EDS. He started saying this around the age of seven and is now eleven years old. For some time now we have been collecting a set of phrases from children and teenagers for […]
Archive | Ehlers-Danlos Descriptive Phrases
“It’s like my legs are being sat on and crushed by an elephant”
It’s Easter Sunday morning and we’ve just finished the Easter hunt in our front yard. As I took photos I noticed an email had come in from Sara. She has sent in a phrase her 10 year uses to describe the experience of living with Ehlers-Danlos & Hypermobility Disorder. “It’s like my legs are being […]
“My Legs Have Turned To Jelly”
I’ve just published some new additions to our Ehler-Danlos Descriptive Phrases List. These are words children of different ages use to describe how their body feels. There are a couple of reasons for putting together this list. Google If we publish the phrases as a blog post heading it means they become indexed by the […]
“I Feel Like My Hand Is Going To Break Off”
Thanks to Alison for sending in her seven year olds descriptive words for what it feels like to have EDS. 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” […]
Why Would A 1-2 Year Old Prefer to Be Held Than To Move?
Helen has written in to us with a description of early indicators that her daughter was suffering with Ehlers Danlos. When she was 1-2years 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 […]
“I’m trying but my body doesn’t do what I tell it to” – A Seven Year Old Describes Ehlers-Danlos
Some years ago now I launched a project to gather words and phrases children and teenagers use when telling people what it feels like to have Ehlers-Danlos. The project came about because parents told me it took a long time to find a diagnosis. This gave me the idea that by blogging these terms we […]
Why Would A Child Get Tired Really Fast?
There are many reasons why a child could get tired really fast. One of them is having Ehlers-Danlos. For some time now we have been running a project recording the words children use to describe what it is like to have Ehlers-Danlos. Thanks to Hannah we have just received some new words to add to […]
A Child With Tired Legs?
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 […]
Why A Young Person Would Feel Old?
Some time ago I started a project collecting the exact words children and teenagers use to describe what it feels like to have Ehlers-Danlos. I was motivated because children can go undiagnosed for many years. This means that they may not get the help they need. Secondly, technology has changed. Anxious parents now sit at […]
My Whole Body Hurts – Mild Ehlers-Danlos
Some time ago we started collecting words and phrases kids use to talk about how Ehlers-Danlos makes their bodies feel. This week I had another comment from a mother in the US. In this Michele talks about her experiences at school and how Sure Steps has helped. As I have never heard of Sure Steps […]