Genetic Disorder

My sister has that. She has learned to get along with it. There is alot that she cannot do cause of fear of breaking a bone or two. And that has happend...She stays away from sports. Hope you find more info. I'm not to sure of the disorder. God Bless

I'll let you know after May 21st. That's when I go to see if I have it. If I have it, then I'll have to get the kids tested. Sorry I don't know more yet.

Hi D.,
I myself was diagnosed with the Vascular type of EDS 2 years ago. Thankfully neither of my two children were diagnosed with it. What type was your child diagnosed with? Feel free to contact me. There is also a great organization, The Ehlers-Danlos National Foundations, with a great website that you can join for support. Here is their website: www.ednf.org They have information for the parents and for the children too. As I said, feel free to contact me.
A.

Hi D.. My daughter was diagnosed with it a few years ago (I have it also). If you'd like to message me, I'm all ears. :)

D.,
I have EDS and so do 2 of my 4 children, the oldest and the youngest. Of the 3 of us I have it the worst but wasn't diagnosed until I was 40 years old and already had all my kids and was already on disability with it. My mother claims she knew there was something wrong from the day I started walking but doctors always brushed her off with I was just different and growing pains. So after years of multiple surgeries including joint replacements and fusions (16 total) and spending most of my teen years in the hospital I am really relieved to have a diagnosis for me and my kids. I can be proactive for them to prevent some of the things from happening that happened to me. We live in Cincinnati and there is a great clinic at Childrens here and there is going to be a get together for all of us to meet coming up. Write me. If I haven't gone through it yet I probably we and we can go through it together. A problem shared makes it so much easier to handle.

J.

Hi, My 14mnth old has been diagnosed with the Classic kind of EDS. You dont mention which type your child was diagnosed with.

She has generalized loose joints and gets weekly physio. She is unable to sit up or stand by herself yet but is getting there. I too would love to bounce info off someone so feel free to contact me. This is my first time on here so I am not sure how we can get in contact. But if you are interested contact me by posting back here.

Hi D.

If you haven't found it already, the Ehlers Danlos National Foundation has a website: http://www.ednf.org/

They have message boards on their website where you may be able to connect with some parents.

Good luck.

Jenn

I suggest seeing an internist. They are trained in multiple diseases. Also try internet searches.

http://www.ednf.org/

This link offers support, information, etc. Try getting in contact with them for others who deal with similar symptoms.

-S.