Jo Ann
My daughter is being evaluated to try to determine if she has this disorder. She has several of the symptoms and traits, but none of the serious stuff like heart complications - just mitral valve prolapse (yet). We are scheduled to see a geneticist at the end of June, so maybe someone can give us more of a definite answer. She is 13 and very tall and slim with very long fingers - which people make fun of. She is always saying she feels so much different from the other kids. She has anxiety problems, and this surely does not help. It would be wonderful if she had a penpal to talk to. She is a wonderful person and it would be great for her to have a special friend. I can always use a friendly word from someone going through this too. Would love to hear from anyone.