vampirefan
02-12-2010, 11:50 AM
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!!!!:ohmy
So far, there is one fun thing about having EDS. I get to freak out people with my "abilitites". :eek:
I am looking forward to getting to know other kids and teens with EDS, as sometimes I feel like no one understands.
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!!!!:ohmy
So far, there is one fun thing about having EDS. I get to freak out people with my "abilitites". :eek:
I am looking forward to getting to know other kids and teens with EDS, as sometimes I feel like no one understands.