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. :)
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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. -
oh ok thank you very much..Comment
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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: Only registered and activated users can see links., Click Here To Register... (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: Only registered and activated users can see links., Click Here To Register...
i hope this helps.
Take care of yourself and your daughters
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Hey!! I have Neurofibromatosis and have been looking for a link, too. I'd love to talk to you.
MarionComment
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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...Comment
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Hi mom!
It's great you and fig found each other.
Last edited by Moderator #7; 10-15-2011, 07:39 AM.Comment
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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 issusesComment
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