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January 31st, 2010, 09:54 AM
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EquestrianMama EquestrianMama is offline
Mega Super Mommy
Join Date: Jan 2010
Location: Seaside, CA
Posts: 1,097
My daughter isn't born yet, but there's a good chance (50%) that she will have neurofibromatosis type 1 like I do. You can read about NF here: Neurofibromatosis, Inc.

I don't have any major problems, nor does anyone in my family. The main things it's caused me are that I have lots of cafe au lait spots all over me, I've had several benign tumors removed, I have scoliosis and a slightly enlarged head, and I'm short. NF can cause more problems than that, but my family has been very fortunate. Chances are very good that Aline won't have any major problems as well. We had a test run so that I could be involved in an NIH study with NF and pregnancy, but I told the doctors I do not want to know the results. Obviously Aline having NF wouldn't change anything, so there's no point in me worrying needlessly about the affects of NF.

Anyhow, I figure I'll probably spend some time over here if she does have NF, so I thought I'd introduce myself and tell you all a little about the condition I have. Are there any other parents with NF or kids with NF out there?
Aline Morrigan, born July 16th, 2010. 7lb3oz and 20 inches long

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