I was diagnosed in 2005 at age 41. It's really interesting to hear so many older people getting dianosed now. Boy, the radiologists and doctors didn't know so much years ago. I remember when I was tested, the radiologists huddled together, and stupidly thinking I couldn't hear them said, "I wonder if she knows she has moyamoya disease? She's old for surgery." Ofcourse now I know that isn't so uncommon anymore. But I haven't been on any websites, or even been able to go to a dr. believe it or not, in a few years. Because of money problems. I get a family dr. to give me my seizure meds, and my surgeon WAS sending me for the special scan once a year, and giving me my results once a year. But I'm sure it won't be anymore, because we had to go bankrupt. My husband is 60% deaf, and I have been trying to explain to him how I can't just go to any dr. to read those scans or order them. He's not even concerned over having put the bills from my surgeon on our bankruptcy. It's like he just feels like I got two brain surgeries so I'm cured. I know that's not necessarily the case. I'm worried about it. I want to live a long life..