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Thread: Neurofibromatosis & moyamoya

  1. #1
    Community Member mom2nfautism's Avatar
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    Default Neurofibromatosis & moyamoya

    Hi i was just looking for forums on Neurofibromatosis and on MoyaMoya and couldn't find any so i thought i would try here. I have a family history of neurofibromatsis and my 16 y old daughter has moyamoya and its getting worse. trying to find where to post so i can post more info on things. :)

  2. #2
    Administrator/SYSOP Mike Weins's Avatar
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    Both of those forums were not active enough to carry over. You can post here in the gen neuro forum as it is the catch all forum for disorders that don't have specific forums.
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  3. #3
    Community Member mom2nfautism's Avatar
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    oh ok thank you very much..

  4. #4

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    Hi!

    I was going to suggest looking at the archives, but i see you were already there as a member!

    You could try the forum for autism here. I am sure many members there have children with other problems in addition to autism.

    There is also a website: http://www.nfnetwork.org/ (click on that link) that might be able to put you in touch with some support groups around your area. Just navigate around the pages.

    Also here is one for Moyamoya: http://www.mdjunction.com/moyamoya-disease

    i hope this helps.

    Take care of yourself and your daughters .

    Moderator #7

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people whose posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  5. #5
    Registered User
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    Hey!! I have Neurofibromatosis and have been looking for a link, too. I'd love to talk to you.

    Marion

  6. #6
    Community Member mom2nfautism's Avatar
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    Hi, i go to a chat room for nf at ctf.org/chat but yahoo me but tell me when you yahoo who me you saw me on braintalk so i knwo who it is. :) mom2nfautism on yahoo...

  7. #7

    Default

    Hi mom!

    It's great you and fig found each other .
    Last edited by Moderator #7; 10-15-2011 at 07:39 AM.
    Moderator #7

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people whose posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  8. #8

    Default NF and Moya Moya

    Hi. My daughter 15 has both. She started having strokes at 2. Since har surgery at two she has not stroked again. But has several other vascular issuses

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