Hello, Everyone!  I hope this finds y'all well.     I thought I'd make my intros. For some reason I woke up this morning and thought, "Hey, I wonder if there is a chat room for this thing?"  ...and guess what...   
Talk about a late-comer... I was diagnosed with Moya Moya in December 1992.  You want to talk about NO INFO!  Back then there was REALLY no info.  I was in Parkland Hospital in Dallas (where they took Kennedy) for a month. I had so many tests done I was starting to feel like Frankenstein's monster.  I was poked and prodded just about everywhere.     Each time I'd ask the Dr's for info on this disease and ask how they arrived to their conclusions, I'd get the same response (just worded differently)... "It's very rare."  At the time, I'd convinced myself that to have a stroke at my age (I was 29), they had no earthly clue what I had and found the rarest condition out there and said, "That's what she has."  About 6 months later I received a large yellow envelope in the mail from Parkland.  In it was a JAMA article about the disease.  With it was a note..."Sorry it took so long.  This is what we have."  Needless to say, my earlier thoughts were reinforced and I tried to fight it tooth and nail.   
I had a doozy of an "episode" May 2009 but that will be for another time.  I've been living with this thing for 19 years (counting the date of my 1st stroke not my diagnosis).  My story is long...duh.  So, I'll take it easy on y'all.     I'm glad I FINALLY had the smarts to seek this out.  Now. I don't feel as lonely as before.  THANK YOU in advance.

Welcome Mel-lo

I'd imagine you're quite fortunate to have had a neurologist back then who actually recognised the disease.

You'll find out plenty about it here. Most topics have been raised and discussed.

Good luck and take care

Mark (Luca's Dad)