nf1 (neurofibromatosis)

luccie · 09-21-2007, 12:05 PM

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.

Julia

Bonnie2 · 10-29-2007, 02:54 PM

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)

09-21-2007, 12:05 PM	#1 (permalink)
luccie Registered User Join Date: Apr 2005 Location: Elko, NV Posts: 8	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. Julia

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10-29-2007, 02:54 PM	#2 (permalink)
Bonnie2 200-299 post 4 of hearts Join Date: Sep 2004 Location: columbus, ohio Posts: 227	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)