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  • September 19, 2008 2:34 pm at 2:34 pm in reply to: NF1 #622132
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    Blue shirt – I am not substituting this for medical advise. In the past 2 months I’ve seen a geneticist, an optomologist, an NF specialist, Radiologist for an MRI and have an appointment with a neuro onc next week. It’s just that when you suddenly get hit with something you never heard of before (although it is supposed to be the most common genetic disorder) you just want to connect to others with the same issues, even though the progression is going to be different for each person.

    So anyone out there dealing with this too?

    September 18, 2008 5:56 pm at 5:56 pm in reply to: NF1 #622128
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    Searching the web I found alot of general information but when I tried looking for more in depth info on the particular aspects of NF my child has (plexiform neurofibroma, optic glioma) I couldn’t really find anything more than broad outlines. Also, being fairly new to this (she was diagnosed with NF at the end of June and the 2 specific conditions I just found out about after an MRI yesterday) I thought I could maybe touch base with someone who has “been there done that”.

    Joseph – I have no reason to assume I am related to nameless. I am actually no name for this thread only.

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