Question?: Rett Syndrome Research

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Thomas asks…

rett syndrome – pleaes help!!!!!!!!?

Hi all> I asked this question yesterdaybut got very few responses – Most that did respond gave me generic websites with a laundry list of symtopms that I am already aware of
I AM LOOKING FOR PERSONAL ACCOUNTS PLEASE
Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight
PLEASE DONT COPY & PASTE INFO FOUND ON RETT SYNDROME SIGHTS!!! IF THAT WERE WHAT I WERE LOOKING FOR I COULD DO IT MYSELF!

admin answers:

I’m sorry that you haven’t found much help here- why not find an internet forum for Rett Syndrome? I’m sure you’d get a lot more informative answers. Perhaps join CafeMom and find a Rett Syndrome group. Or poll some people on the IRSF website?

You’re at a generic internet forum at the moment, it might be tough to come across people who have experienced a very specific illness. Try going to a more specific internet forum for more information.

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