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Topic: Anyone with MoyaMoya? (Read 684 times) |
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LisaH
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Have you or anybody you know been diagnosed with Moya Moya Disease? I have recently been diagnosed and would like to talk to others with this disease.
It turned out to be not "just a headache"! 
Thanks
LisaH
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jonny
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Re: Anyone with MoyaMoya?
« Reply #2 on: Sep 10th, 2002, 5:45pm » |
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Sure!!!, I had that before.....aint it the green drink with the umbrella?
Man, did I have a HA the next day, stay away from that moya stuff.
......................jonny
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DJ
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Re: Anyone with MoyaMoya?
« Reply #3 on: Sep 11th, 2002, 12:24am » |
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Yes Lisa!
I was diagnosed with Moya Moya last June. Just sent you an email....
Thank you Melissa for putting your post up (and Jonny for the phone message)! I was at work and just got home.
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I NEVER could have imagined! (April 11th, 1998 - present)
Adversity does not build character... it reveals it.
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catlind
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Taz taught me the cluster dance
  
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Re: Anyone with MoyaMoya?
« Reply #4 on: Sep 11th, 2002, 11:33am » |
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Anyone who is interested can get some literature from the National Organization for Rare Disorders.
Headache, Cluster is publication #720
and Moyamoya Disease is publication #617
Each publication costs $7.50 if you order it, I'm not sure how much they have online. NORD Literature
PO Box 1968, Danbury CT 06813-1968
Make sure you include the entry # and # of copies you want and send a check or money order and a return SASE if you don't use the NORD form to order it.
NORD's website is http://www.rarediseases.org
NINDS: http://www.ninds.nih.gov/health_and_medical/disorders/moyamoya.htm
Cat
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| « Last Edit: Sep 11th, 2002, 11:36am by catlind » |
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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DJ
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Re: Anyone with MoyaMoya?
« Reply #5 on: Sep 11th, 2002, 12:59pm » |
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Yes, you're right catlind. Thank you for the links!
I also encourage anyone with Moya Moya to contact me personally via email....
Being diagnosed with the disease, I've built an EXTENSIVE list of EVERYTHING I found available on the web about Moya Moya. It's probably much more than the NORD can give you!
I'll pass on all of my info FOR FREE to anyone interested.
DJ
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I NEVER could have imagined! (April 11th, 1998 - present)
Adversity does not build character... it reveals it.
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maria
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Re: Anyone with MoyaMoya?
« Reply #6 on: Sep 11th, 2002, 11:09pm » |
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MoyaMoya, Mama Mia, is there any relationship between MoyaMoya and clusters, can you have both or DJ are you truely, as they say here, one in a million or 2 million? Maria
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