Hey

[Mcsuperawesome]

Hey guys, I'm Shannon Katherine. Most people call me Kat. I have chronic fatigue I have have EDS too.Type 3 so far, they just did a skin biopsy for other types. I do have chronic pain from it, and if I go anywhere worth going, I'm in my handy dandy wheelchair. I do have hip spikas to keep my hips in place if I really do want to walk around, although, they're big and bulky.
I also am doing a home bound program, because it's difficult to to stay in school with my conditions.
I am a dancer. or was, on my good days, I dance ballet like i used to.
I also used to be a runner, but had to stop.
I was just diagnosed in May. It started out just to see what was wrong with my hips so I could run cross country, turns out....no more running for me...haha
Um. I was big in sports, so this diagnoses was a big slap in the face. But it also explained sooooo many things.

anyways.
I'm Kat, glad to be a part of this.

[xxBrittany]

Hello Kat.
Wow, hearing what you just said about yourself truly reminded me of myself when I first got diagnosed in so many ways. I have EDS types 1 & 3 among other conditions and I used to be big into sports as well. I played Varsity basketball & lacrosse but had to stop because of my worsening conditions.
If you ever need anything, please come to me or gwen we are both the creators and administrators of EDSkids.

I just wanted to take a second and write you a quick welcome note and let you know I understand totally what you are going through and to tell you, you are not alone in any way at all.

Like, I said if you ever need anything please don't hesitate to ask.

Again, welcome to EDSkids, I am sure you'll find your spot rather quickly within our close-nit EDSkids family.

[Katherine]

Hey *waves*
Nice name :) my friends used to call me Kat, not many do anymore its more like Katherine, Mush, Kaz or Kas or shorty or, well the list continues!
Welcome aboard! I have EDS vascular or IV or whatever they call it! i got diagnosed when i was 16 but had been having tests since i was 13, the skin biopsy was to find out which type i have.

[Chiara]

hi! nice to meet you :)
my name's Chiara and I have EDS III type..i got diagnosed in march..
I'm glad you joined our community!
P.S. I'm italian so that i do not speak english very good, sorry bout that!
Chiara

[Chiara]

oh, and i used to dance ballet too, until my hip didn't start to hurt too much to stand it..

[xxBrittany]

oh, and i used to dance ballet too, until my hip didn't start to hurt too much to stand it..


I give you dancers all the credit in the world, because ballet especially en pointe looks SOOO hard and involves a lot of stability and endurance.

Put it this way, I'd be screwed from the beginning!:haha::laughing001:

[ReineDeLaSeine14]

Hey I"m Stephanie...I have an odd type of EDS that hasn't been seen yet (i'm missing a gene) but I deal with a lot of dislocating and pain as part of it.

Do you think you can post pics of your hip spicas? I'm braced from mid thigh down but it's my hips and back and SI that are throwing everything else out.

Welcome! If you need anything don't hesitate to contact me.

[Chiara]

I'm interested in hip spikas too, could you post the photos please?

:spoon::spoon::spoon: :)

[xxBrittany]

What in the world are hip spikas?

[ReineDeLaSeine14]

hip braces!!!!

[xxBrittany]

But why are they called Spikas? It just makes it sound so painful.

[Mcsuperawesome]

http://www.orthoticsprostheticsne.com/home/images/stories/ortho/Hip%20Spika.gif



This is the exact brace I have.
Exact.
It's bulky.
It's hard to walk in, but it doesn't allow me to move my leg in such a way that would dislocate it. It limits my movemnt, but hey, it keeps my worst joint in place. My left hip is the WORST ever.

[xxBrittany]

Ouch. That thing looks painful, but HEY, if it helps it's all worth it!
Glad it is working for you Shannon! :)

[dev.x]

hey
im new too and i also used to do alot of dancing..ballet..tap..modern..and flex, i was her favourate in flex cos i can do anything lol can do that now tho :/ can walk without crutches and having operation on monday!!

[ReineDeLaSeine14]

I've never seen that brace before! I'm very small so a lot of braces can't be used on me.

[xxBrittany]

Stephanie, that sounds like such a hard problem to deal with. So do you have to get braces specially made when you need them?

Hello Dev, you're a dancer too!? It must run in a lot of EDSer's cause of flexibility I guess?!

[SophieeBabessxo]

I do a bit of dancing too :)

[ReineDeLaSeine14]

For me...they don't even bother making them lol

I have custom thumb ones and have the order forms for SRS but it's mostly tweaking.

[xxBrittany]

Ah that stinks!

I do not have any fancy braces like those that you all have!

Where do I find them? At a pharmacy or do I get them from the doctor, because I think it's getting to the time where I might need to invest in some...

[ReineDeLaSeine14]

Britt your best bet is to have them prescribed to you by a doctor so you get the most supportive and the most proper ones. All mine except for my typical wrist splints were prescribed to me. I have an Rx wrist one too for injuries.

[xxBrittany]

Ok, good to know! Thanks for telling me!