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~Welcome New Members!~ Are you a new member? Drop on by and tell us a little bit about yourself!

Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 02-12-2010   #1
vampirefan
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(: Hi
Hi, I'm Amanda. I am 12 years old and have EDS, either Hypermobile or Classic (we aren't 100% sure yet). I live in the US and do not know anyone else with EDS except for my Mom. I was diagnosed about a year ago.

Yes, my avatar is a picture of my hands. My hands, wrists, knees, feet, elbows, shoulders are hypermobile and I have mild scoliosis. I had a very narrow pallate so I have had braces since I was 10. So far, my hips seem OK, but they said my shoulders were ok...BEFORE they started popping out.

My mom has the stretchy skin, I only have it on my feet. I deal with IBS as a result of the EDS, and I go to PT twice a week.

I like my rhumetologist. He's Dr. Keitz in Pittsburgh Children's Hospital. The geneticist was not very helpful but at least we got the diagnosis. She said SHE had EDS, but then they said it was "just a label". They didn't do much at all, the rhumetologist was the one who identified all the hypermobile joints.

I have a 504 at school which kinda is a pain in the butt but we couldn't get anywhere without it. My mom says getting an elevator installed would have been easier than getting an extra set of books and bathroom privledges.

My gym teacher is actually cool about it and doesn't give me a hard time. I'm just sick of getting hit in the face with balls so at least I get to self-limit now!!!!

So far, there is one fun thing about having EDS. I get to freak out people with my "abilitites".

I am looking forward to getting to know other kids and teens with EDS, as sometimes I feel like no one understands.
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Old 02-12-2010   #2
SophieeBabessxo
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Heyy! How are you doing?
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Old 02-12-2010   #3
vampirefan
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Im doing pretty well. How about you?
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Old 02-12-2010   #4
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I'm normally doing well. But my knee dislocated in my sleep last night, which pulled a muscle and that's made my hip go really weak :/
But apart from that, I'm finee thanks
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Old 02-12-2010   #5
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Well the same thing happened to my mom the other day trying to catch the cat...but it popped back in almost right away.
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Old 02-12-2010   #6
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Mine do that all the time, i'm just thankful that some of my friends know I can't help it and they help me a lot
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Old 02-12-2010   #7
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Some of my friends are better about it than others.
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Old 02-12-2010   #8
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sameee, but i'm ok with it
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Old 03-12-2010   #9
ReineDeLaSeine14
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Hey welcome! Gosh I'm in college and I have problems with friends regarding my EDS!
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Old 03-13-2010   #10
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Some of my friends are annoying me a bit atm. They keep pushing me to do more >
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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