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.

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 their computers and type in words and phrases to try to track down a reason why their child is suffering.

In many cases they might use the exact phrase their child has used to describe how they feel. In other instances they might type in a question – like the title of this blog.

I am hoping that this project will give voice to the children themselves as well as provide clues for parents desperate for answers.

Here is the latest contribution sent in by Angela. Thank you for helping us build a body of knowledge on the words children use to describe having Ehlers-Danlos.

My daughter explains that EDS makes her feel old. She has said that there are some days that she feels she has more pain in her joints than an eighty-year-old. She has tendon transplants in her knees, and she worries that someday she will have to use a wheelchair like I do (also from EDS). She then tries to work against the pain, and tries to ignore when her body tells her to stop.  She does not want to get worse. Usually, however, she gets injured from doing this. It upsets her, and we have had depression issues from this. She has an enlarged aortic root from EDS, but she just tells people that there is just too much love in her heart…

If you would like to add to our collection of descriptive phrases please use the contact form on this website.

Your contribution will be very welcome and just might turn things around for a child with no answers.

Some time ago I started a list of comments from children who had Ehlers-Danlos in the hope that that list would lead to early diagnosis for other children. I have had several emails and I have been adding to the list.

Here is the latest comment sent to us.

“This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does “say” is “my brain hurts”. He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn’t understand my son. Finally a diagnosis. He just points to just about every joint in his body at different times and says “hurts” as well as having EXTREME fatigue.”

I am so pleased this information is helping people. Please consider writing down your experience and sharing it with others – together we are building our own knowledge bank.