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Neurofibrosis


miran
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If anybody knows somebody or anything about NF, please PM me. It's urgent, please....my 6 year old nephew might have it.... The internet paints a really disturbing picture - we need hope!!!

Regards

Marinda

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Maybe if you Google it? There is a lot of rubbish on the internet but also some good info. Good luck

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Hi Miran

Don't know much about it... but can recommend you go the mother of all sites... they a medical section...

www.refdesk.com

Best of luck

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I have googled it and that is why I'm so panicked!!! I'll try refdesk, thanx. We need someone with personal experience to tell us it's going to be all right!

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Hi Miran

First things first, you say your nephew might have it, so you need a definative diagnosis from a specialist and then a second opinion

I say this because the disease is usually picked up by observing cafe au lait spots and then other symtoms but a visual diagnosis is not enough- make sure!

The internet is both wonderful and horrible, because as you say the info you have seen is scary- just remember that this is a broad picture encompassing all symptoms and complications- many sufferers have nothing more than the marks and lead normal lives.

I am certain genetic testing will be ordered as one of the parents must have the gene.

So hang tough in the mean-time and let us know once all the facts are in and perhaps we can offer practical advice and most certainly support.

Thinking of you and your family :rolleyes:

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