February 2013 I was diagnosed with Moyamoya. I've had my struggles following surgery, but overall I'm doing well.

I live in a small community that has little knowledge of Moyamoya. So, both years since my diagnosis, on World Moyamoya Day, I've held an educational day at a local hospital and called it "Cinco de Moyamoya" (as it falls on the day after Cinco de Mayo).

This year, I would like to include a presentation called "The Faces of Moyamoya". You see, I'm a tall blonde Scottish woman - not the typical Moyamoya patient. And what I've learned these last two years is that there USED to be a typical Moyamoya patient, but as technology has improved, our faces are changing because we're being diagnosed more readily.

So, if I get enough participation, I'll make an informal educational visual presentation (iMovie or PowerPoint or the likes).

If you're interested in being included, please send me your photo. You can send a few if you want, scars, no scars, however you want to represent. Please just make sure you've been diagnosed with Moyamoya (disease or syndrome is ok).

If you send pictures of children, please make sure that you are the consenting parent and are agreeable to me using their images.

Photos can be sent to my email at bnl1901 at gmail dot com. Please don't spam me. I really just want to make a cool project to educate people about this hole in my head :)

Hi,

You sound powerful, so more power to you.  My son was diagnosed  at 40 and had operations on both sides right away.  He's recovering but with many problems, the worst being the constant headaches he gets.

Did you have bad headaches?  And what did you do about them?  I'll see if I can get my son to comment.

Good luck to you.

charles coryn