NF1

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  • #588277

    no name
    Member

    Does anyone have any information regarding this condition?

    #622128

    no name
    Member

    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.

    #622129

    Joseph
    Participant

    no name, Try typing into Google the name of the condition as well as the particular aspects you are looking for. For example Google: Neurofibromatosis type 1 optic glioma

    #622130

    mariner
    Member

    no name: you can also try wikipedia, but take everything there with some caution, alot of it is nonsense. also, refuah sheliemah.

    #622131

    blue shirt
    Participant

    Dear no name,

    NF1, like all neurological diseases, requires knowledge, experience and intuition to treat. You are doing yourself a disservice by asking about it on this site. Googling it will give you much, maybe too much information, with a high probability that very little of it will be useful to you. Google does not know your child. Make an appointment with a respected child neurologist for a consultation, ask all the questions you want and make sure you understand the answers. Your child will need follow up appointments in the future, stay with a neurologist who you feel comfortable with. Behatzlacha.

    #622132

    no name
    Member

    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?

    #622133

    feivel
    Participant

    heres about 500 people

    htttttttttp://dailystrength.org/c/Neurofibromatosis/support-group

    remove a bunch af “t” s from the address

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