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.