tmd090301
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I was just diagnosed at 33, and just like you I had no idea all of my symptoms were connected to one thing...KFS. I thought too, it was just a stiff neck, but now after research I am realizing how serious it really is. It seems very important that we should go for further testing immediately to check on other possible side effects. They say to find an orthepedic specialist. I just made my appointment for further tests with my local hospitol in the genetic testing department. If i recall correctly I saw alot of great genetic specialists in the UK for KFS.I also recently purchased a book on Amazon called, "The official Parent's sourcebook on Klippel-Feil Syndrome...but obviously it's for us...it had good info. Hope this has helped. Sincerely, Toni |
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