Hello all!

TinyBrooke · 10-10-2010

Hi! My name is Brooke, I'm 16 and I live in the States.
August of 2010 I was diagnosed with EDS Hypermobility type, but I've known I had EDS for a long time because my older sister (who is 24) has it as well and was diagnosed 3 years ago.
I love to read, dance when I'm not hurting, and completely geek out with my friends, who for the most part are very understanding.
At the moment I'm at the awkward stage where I want to continue dancing and taking more classes (I currently have 5 hours a week: ballet, modern, tap, and jazz), but I know I shouldn't because of my EDS. This year I also started doing color guard (flag twirling) at my school, which is throwing my shoulders way out of whack. It was probably a stupid idea, but I love it, minus the pain.
This summer I went to the EDS conference in Baltimore. Before I went, I had my doubts as to whether I really did have EDS because mine is fairly mild and controllable. Once I got there, however, I was completely blown away by the fact that I was just like these kids, though to a lesser degree. Those four days were some of the best in my life because for once, I felt truly accepted.
Wow, that was long. I really wasn't planning on writing a novel in this thread, but whatevs. I guess it's the writer showing in me.
So anyways, I look forward to getting to know you all!

SophieeBabessxo · 10-10-2010

Hi Brooke! It's lovely to meet you! I used to dance a lot too, but i hated my teacher so i quit and haven't found a new class yet

My EDS is also fairly controllable too, I'm not on that much pain meds and can take part in PE and what nots.
Hope to speak more soon

x

TinyBrooke · 10-10-2010

Since I was just diagnosed, I currently don't have any pain meds or splints or anything that could potentially help me except a key for the elevator at school. Kinda sucks.

ReineDeLaSeine14 · 10-10-2010

Welcome Brooke!

Over time you'll figure out how your EDS affects you and what you need to do to control your symptoms...does your doctor have any sort of treatment plan for you...meds, PT, OT????

TinyBrooke · 10-10-2010

Not at the moment, my geneticist doesn't recommend any pain management specialists in my area. I know I probably need ring splints for my fingers, I got evaluated for them at the EDS conference this summer. My GP sent a referral for OT, but I don't know when that'll happen. I already have a lot of experience dealing with pain from EDS because I had to watch my sister try countless methods over the years, and we have similar issues, so a good place to start would be the things that helped her. Right now, I'm just trying to get through each day of school as best as I can. It's going a lot smoother now that I have an elevator key so I don't have to go up and down those awful flights of stairs *shudders*.

SophieeBabessxo · 10-11-2010

My knees and wrist and fairly bad atm :/ I need to invest in some better supports soon or I won't manage soon :/

xxBrittany · 10-20-2010

Welcome Brooke, I am the administrator here at EDSkids.
Hope you can find comfort into talking to all of us, as to the fact we are going through the same things that you are!

Stay strong, and hope to see you around the boards more often!