Hello, my name is Andrew Taube and I am a student at Daemen College in Buffalo, NY where I am studying to be a Physical Therapist.  I am in my senior year and am currently taking a class on Navigating Rare Diseases being taught by a patient advocate for patients suffering with Acromegaly.  As part of our class, we have to write a paper about a rare disease and for that I chose this specific disease.  I have never heard of it but have been doing research and this message board came up.  I have read a bunch of your posts and it is truly amazing to see how supportive everyone is of one another; offering advice and tips for positive lifestyle.  I am wondering, if anyone is willing, to give me the low down on this disease.  I am inquisitive and just want to learn about it from a patient/family/friend who deals with it on a daily basis.  I hope everyone that reads this is doing well with their specific case and always keeping a smile on your face through everything you have to deal with.

Thank you in advance to anyone who offers information and I wish everyone the best with whatever challenges they are faced with. 

~Andrew T.~

I have Moya Moya disease and have had two bypass surgeries. I would be willing to help. You can reach me at dksisco@hotmail.com.

Thanks, Kim

I have MoyaMoya.  I live in the UK and was diagnosed in 1980 when I was 11 and had my first bleed.  I had a second bleed in 2002, during pregnance.  I have not had surgery.  I would be willing to help you if my UK residence is not a problem.

I am almost 40 and I have MoyaMoya.  I have it on both sides and I've had surgery on both sides too.  If you would like more information about me, my strokes and/or my recovery my e-mail address is jendferguson@yahoo.com.  I would love to talk to you and share my experiences.  I think what you are doing, is great.

Jen

Hello,

I'm Cassie and i have Moyamoya. i would love to talk to you about my experience and etc.

Thanks
my email glassesgirl99@yahoo.com

Cassie