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.~

Hi Andrew,

My name's Tara, and I have Moyamoya Disease. I would love to talk with you about the disease, my experience, etc. My regular email is tmgotchlorine@gmail.com. Please send me an email and we can continue our discussion there.

I hope you're doing well!

Sincerely,

Tara

P.S. -- Thanks VERY much (in advance) for what you're doing, as well!!!

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 had initially a indirect procedure, on my left side. Only half of my brain is affected. I needed another surgery which was created by doctors from my hospital that wasnt the standard. I have different symptoms that they based on different condition when in the end all my symptoms were created by MoyaMoya as they found out. If you want to know my story and all that I've been through as every person has a different story you can email me at jennyrenee.g@gmail.com
~Jenny

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.

My daughter was diagnosed with moyamoya at 5 yrs old. That was 10 yrs ago. she ahd severe strokes and still has some lasting affects of the strokes. She was also born with Down syndrome, this is a higher risk population of people for Moyamoya. My email is
mgrace5@nycap,rr,com
Mary Grace

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 Andrew,

I was recently diagnosed myself (though there is some debate) and would love to be part of your paper as well if you need some more assistance. I can be emailed at d_thwaites@ureach.com

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