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You all are so wonderful to post all of this info and your personal stories and so much rang true for me-the pain, tingling, dark mark on right cheek, cheek indentation, migraines, jaw pain, wavy vision at times, shooting electric pain in cheek,reynauds, elavated ANA?? I was beginning to feel crazy until I found this site and saw that numerous people had all of these symptoms as well.I feel very scared and very alone and would love it if anyone would respond to me.I am glad to have read your story, and to gain more knowledge on this rare disease.
If you do not receive the verification message within a few minutes of signing up, please check your Spam or Junk folder.Not for the syndrome itself, however it seems terrofying *or however you may write this word*, but for all the boys & girls who couldn't accept the way she looked.i really hope the best for her and all the other patients! My email is [email protected] me anytime that you need to talk. Just a stranger from across the pond but I just read Kelley's article in Readers' Digest - blowin' yer a kiss gal, & wishing you the very best. I just want Kelly to know that I think you truly are a beautiful girl with a wonderful spirit. Keep sharing your story so that people can understand this disease and accept those that live with it. I know what it is like to have doctors think something is trivial about certain ways our kids look but we know them and can look at little things and know something is wrong.