Posted by DJ on May 01, 2003 at 21:06:07:
In Reply to: So many questions...so few answers! posted by Shana Turner on May 01, 2003 at 19:43:31:
I am so terribly sorry for the horrible loss you and your family have suffered. It's the EXACT reason I've tried to put as much information on this web site as I possibly can about this rare, now deadly disease.
Honestly, I've seen numbers from a few studies where people have passed away from moyamoya, but none of them have "hit home" with me until now.
It makes me realize how really lucky I am to have been diagnosed early on with my moyamoya and what the outcome could have been for me if I had not been treated by such a wonderful surgeon and institution as Dr. Steinberg and Stanford University.
As a personal survivor of moyamoya (not a physician), I will gladly attempt to answer any questions of yours I can. Those I cannot answer, I will bring up to Dr. Steinberg next week while I am at Stanford having the follow-up from my second surgery.
Please email any and all questions you have to me at: dj@moyamoya.com. If you would like, I will give you my numbers so we can talk about it over the phone also.
Again, I'm so sorry for your loss. I hope we can all help you get through it. Thank you for sharing with us!
Sincerely,
DJ