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nf1 (neurofibromatosis)

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  1. #1
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    luccie's Avatar
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    Apr 2005
    Elko, NV
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    nf1 (neurofibromatosis)

    Does anyone here have it?? I was just recently told I do. At 41. Still am in shock. I would of gone straight to donor if I knew. Now I am starting from scratch trying to find info and ways to test to see how severe my case may be. Any info from other ladies would be great.


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  3. #2
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    Sep 2004
    columbus, ohio
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    If u just found out u have NF1, you must have a mild case. lucky you!

    As u know, your child has a 50% chance of getting NF also. You can have your fertilized egg tested before implantation, but you must have had your NF gene mutation identified first. You child will have the same gene mutation you have-if they get it. (University of Alabama does the gene test)
    Or, once ur pregnant, you can have an Amnio or CVS and they can check for the mutation in the fetus then. Talk to your RE and a good genetics doctor about pre-natal testing.

    Good luck!
    (ps-go to the childrens tumor foundation-there is a discussion board)

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