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Does anyone else have the NF with moyamoya (Read 1558 times)
mlgohsman
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Does anyone else have the NF with moyamoya
May 30th, 2008 at 1:47am
 
I was wondering how many of those with moyamoya also have NF. I have NF type 1. It bothers me sometimes because i have some fibroma on my legs feet and back and belly, i started getting a boat load when i was pregnant with my daughter. I never knew NF could be accompanied with moyamoya. I wish they would get thier butts moving on some studies and get a cure or at lease something to slow the NF, so we dont get these tumors all over our body (fibroma's) and so moyamoya no longer accompanies it also. Its such a bummer because not only do i NF type 1 and moyamoya, i also have a autoimmune disease called Sjogrens'. I think I have almost got to be one of a kind, lol, I am praying for everyone out there, If anyone else has the NF i would love to talk, I only know my mother who has it. thank-you

Michelle
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Jeni
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Adairsville, Ukraine, GA, Georgia
Re: Does anyone else have the NF with moyamoya
Reply #1 - Jun 22nd, 2008 at 7:54pm
 
I know a mother of a Moya Moya patient that has NF but her daughter doesn't. My daughter has Moya Moya and she MTHR, it is a long long word and I still don't quite understand it , but she has to take folic acid to keep everything in check, Plus she has factor 5 blood, this puts her at risk of developing blood clots, this has nothing to do with her disease, it just aggravates it. She has had 4 surgeries so far. This is so new to research that it has not been determined what goes with the disease and what don't. Frustrating I know but keep praying for a break through.
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