Author Topic: Neurofibromatosis  (Read 2082 times)

Offline Badgermom

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Neurofibromatosis
« on: February 16, 2007, 04:52:05 PM »
Does anyone have any first hand knowledge or experience of this disease/disorder?   I have done some internet research, but it looks like there are so many unknowns.  Just wondering if anyone is dealing with it and what life with it is like.  Also, has anyone had several cafe-au-lait spots and not had it be neurofibromatosis?

Offline Mama Sita

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Re: Neurofibromatosis
« Reply #1 on: February 17, 2007, 03:14:13 AM »
Sorry, never heard of it. Hope someone here can help you out.
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Offline EverLearning

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Re: Neurofibromatosis
« Reply #2 on: May 18, 2007, 08:43:53 AM »
Bumping this.

My daughter was diagnosed with probable NF about 4-5 years ago, after we noticed her cafe au 'lait spots multiplying and growing larger.  They are still growing each year, but we were told that other than a yearly eye and ear check-up to watch for tumors, there was nothing we could do other than wait until she reached puberty and see what happens.

Since my recent trip into natural health, I am beginning to think that we could be doing something, anything, as a preventative.  Doctors seem to be clueless in this area.  I'm thinking about starting her on regular doses of carrot juice.  Any other suggestions?

Amy

Offline Mom2four

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Re: Neurofibromatosis
« Reply #3 on: May 18, 2007, 09:06:47 AM »
I may be wrong, but is it an autoimmune disease that causes these spots?  If so, I have a friend who has it and she has gone on a strict gluten free diet and that has really helped a lot.  I may have the wrong disease totally, though.  I just remember she went to a dermatologist because of the spots and she did have a benign tumor on her spine as well.