Neurofibromatosis & moyamoya

[mom2nfautism]

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. :)

[Mike Weins]

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.

[mom2nfautism]

oh ok thank you very much..

[Moderator #7]

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 .

[Fig]

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

Marion

[mom2nfautism]

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...

[Moderator #7]

Hi mom!

It's great you and fig found each other .

[Pmteet]

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