...<Long sorry>....(Re: I am new)

[Guest guest]

Hi there ,

and welcome to a group that I am sure you are gonna be glad you

joined!...Sorry to hear that you and your daughter are facing so many of

the challenges that come with an EDS diagnosis...and though you say yours

is the first case your Doctor has ever seen...well <unfortunately...> this

is likely the case for most of " us " ...(being our Doctors' " first " )

Briefly I am Cheri (I'm 46) and only heard of EDS 2 1/2 years ago and was

diagnosed by a Geneticist 2 years ago..though I have known I was

double-jointed..and have had increasing problems, throughout my life...

I also have some early onset Osteoarthritis (a fairly common occurence

with HEDS) and Fibromyalgia....I live in B.C.

I don't have any children (but was one once <wink> a long time ago...)

so would recommend though that you get all the help you can as in

....suggestions and experiences from this list as well as the articles that

Jill can send you and print them off for both your Doctor and the school

(taechers etc...) perhaps you could put all this info into a binder and

encourage them to " see the proof " of what kind of porblems people with EDS

face on a daily basis....I took one to my Doctor...don't know how much he

read, however he now follows my lead, when I want to pursue something or

tell him I " need " something etc...you will find that you must be your (and

your daughters) own best advocate and learn all that you can because the

only way to get some of the results you need from these people is to

<often> be the one informing them....

It would be imperative (in my opinion) to have a discussion with the

teachers about how EDS is a Connective Tissue Disorder and how the amount

of wear and tear that would be " normal " for the " average " person can be

*very* damaging...long term for EDS'rs. As an example, for me as very

hypermobile as I was as a child and able to do all the " neat tricks " etc..

I *was* very flexible and went into baton twirling, (ballet if my mother

could have gotten me interested enough and though I didn't hurt *then*

I sure do now...and though I am still hypermobile underneath it all...am

getting stiff, arthritic and muscular aches...<beyond what would be

considered " normal " at htis stage of life...it seems the more damage

<*Important*>...often unknowingly> that we do in our youth, we end up

paying for in spades in our adulthood....

I hope you are able to get them to listen on behalf of your

daughter...and now that you have found others with the same condition

perhaps friends/family and your community will be more compassionate to

your situation....I find that often (surprisingly enough) both " reg "

people and profeesionals *are* interested in gearing you ...once you can

give them an explanation....

anyway welcome and wishing you both all the best

Cheri