Hi,

I just found this website and am thrilled! Recently got my EDS dx after my 2 year old was diagnosed. I batted 1000 since my 8 year old has it, too. My mom, and my only sibling have the correct history as well.

Anyhow, just wanted to say introduce myself and ask a quick question.
Introducing...
Liz
mid-thirties
nearest metropolis is Pittsburgh
in my husband's words, "Ehlers-Danlos finally explains all of your crazy medical problems"
two daughters with EDS

Anyhow, my question is about my daughter. How can I explain EDS to her teachers who seem mystified that she can feel fine one minute and be in terrible pain the next? I don't want her to have the complainer label I had in school.

Thanks!

Hello!
well i am an 18 year old living with fibromyalgia.. and im still in school.. and over the past 2 years i have had to explain to gym teachers why i couldnt participate in half the activities that he wanted us to do..
soo idk id say bring in information on EDs and tell her teachers exactly what it is and what not.. idk its the only thing u can do.. just bring in things to explain it to them so they can understand!!

KiKi,

Thanks for the suggestion. I remember how frustrating gym class was for me-- good luck on handling that challenge. Of course, I don't think gym class horror stories are limited to EDS folks.

Some followups for anyone to chime in on...

Any specific sources of information seem to work better than others? Did you have a doctor intervene on your (or your child's) behalf?

Liz

Welcome -

Hope you find the help you want, need and deserve here or someone can point you in the right direction...

I was going to say EDNF too...even though their site is a PAIN.

Just wanted to say Welcome!

Hi Liz. Welcome to the board. So glad you're here.

Thanks for the welcome.

I know what you mean about EDNF site being a pain. Between having to register, being bombarded with pleas for money, and poor navigability I gave up on it. But thanks to the encouragement I decided that the hassle would be worth it and I found a couple of downloadables that will be helpful.

Again, thanks!

liz

http://www.ednf.org/index.php?option=co ... d=88889049

Did a quick search - Here is the link for the Teachers Guide (for EDS kids).

Click on the PDF icon on the right of the page and print, or just copy and paste from the site.

Alternatively you can purchase the paper copies from the EDNF store...

Yes the ednf site is hard to deal with. I can say that because I am a member. For now you can steer clear but eventually...oh yes not the time or place.
Try this:
http://www.ehlers-danlos.org/index.php? ... e&Itemid=1 (homepage)
http://www.ehlers-danlos.org/index.php? ... 1&Itemid=9 (specific )

Also Canada has a group.. I think it is CEDA....
This the group from across the pond as they say. Much easier to navigate message boards are set up like this one. They also have printed publications. My child is now 11, it is very dificult to explain but you will become good at it! The thing I think most helpful is to take into consideration who you are speaking with. Gather as much info in general and about you child as you can process and retain. Then use it. What info the gym teacher needs will differ from the art teacher etc. but they will be getting all the same info. They will take what they need..or interested in . that is why it is imparative you have a IEP in place. If not already get started as it takes months in some areas of the country to put in place. Before we had ours in place? My child missed almost a year of gym.. (everything was fine under the previous gym teacher). because this gym teacher was well, lazy. He did not care to figure out what to do with her so she sat out gym every week, twice a week, just sitting on the stage with nothing to do except watch everyone else. didn't even have her keep score or anything! He was let go at the end of the year thankfully. Perfect example of why a IEP needs to be there.
Also you may consider talking with your child about how they would explain it. After all it is them.

Yes did another quick search and there are other groups like the Canadian Group is CEDA as well as EDNF (there is free membership if the membership costs are too steep and others...

Good Luck and talk to your kid(s) and see what things they are finding hard (i.e. writing, sitting, walking, carrying, being jostled, carrying things etc etc).

I don't have EDS but I just noticed your location and wanted to say Hi back from WV. I've been living here for nearly a year now.

I have cerebral palsy and type 1 diabetes and some other stuff. Gym class was torture for me as well. No coordination, no strength and at the time, no diagnosis. Growing up knowing can make such a difference I think.

Hi back!
Shouldn't we be sleeping now?
-Liz

I probably should, but I was up much of the night (work at the hosptial) and then came home and napped. And this is my alert time of day. . . er, alert time of night? Left to my own devices I would sleep from 2AM to 10 AM. If only my work schedule revolved around that!