miran Posted June 11, 2009 Report Share Posted June 11, 2009 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!!!RegardsMarinda Quote Link to comment Share on other sites More sharing options...
Dreams Posted June 11, 2009 Report Share Posted June 11, 2009 Maybe if you Google it? There is a lot of rubbish on the internet but also some good info. Good luck Quote Link to comment Share on other sites More sharing options...
Joefromsa Posted June 11, 2009 Report Share Posted June 11, 2009 Hi MiranDon'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 Quote Link to comment Share on other sites More sharing options...
miran Posted June 12, 2009 Author Report Share Posted June 12, 2009 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! Quote Link to comment Share on other sites More sharing options...
AndreaL Posted June 12, 2009 Report Share Posted June 12, 2009 Hi MiranFirst things first, you say your nephew might have it, so you need a definative diagnosis from a specialist and then a second opinionI 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 Quote Link to comment Share on other sites More sharing options...
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