Internet support for those
diagnosed with Moyamoya Disease
Maui? What the hell is that!!??"
Those were my exact words when I first heard of MoyaMoya in June 2001. I
spent the next two months searching the internet for everything I could
find on MoyaMoya Disease. My name is DJ and I've been "blessed" with
If you're here, it's probably
because you're like me and came to the internet to find out more about
this rare disorder. If you're like me, you also didn't have much success
looking through the search engines. There's not a huge amount of
information out there huh?
Well, that's all
about to change!
Probably the worst part about being diagnosed with
a rare disease is thinking you are the only one in the world who is
dealing with the problems associated with the disease. I hope to change
Estimated prevalence of MoyaMoya
in the US from a study in the mid 1990's was approximately 1 in
2,000,000 people. Updated numbers have recently been reported in a study
that looked at MoyaMoya cases in US hospitals between 1988 and 2004 that
puts the prevalence at more like 1 in 119,000
I would like to build
the world's largest support group for family members and those that
suffer from MoyaMoya.
Never again do I want
someone to have to come to the internet and have as much trouble as I
had finding information on MoyaMoya. I hope to save you the time by
putting all of the links here that it took me months to find.
I've successfully come through from my second
STA-MCA bypass surgery at
Stanford University and am concentrating on building a bigger and
better support site for those diagnosed with Moyamoya and their
I have plenty of pics from both
my first and second surgery and will be putting more pictures and video
up as soon as I can. Check out the new
Message Board to communicate with other Moyamoya families and let us
know your story on the Guest Book!
Also, don't miss the
Stanford University above and some of my links on my
links page. Also, below is a fantastic clip from Dr. Ed Smith at
Children's Hospital Boston talking about they type of surgery they
specialize in there for treating younger patients. I hope they are of
some help to you!
All information contained on this web site is for informational purposes
only. It is in no way intended to be used as a replacement for professional medical
treatment. moyamoya.com makes no claims as to the scientific/clinical
validity of the information on this site OR to that of the information linked to from this
site. All information taken from the internet should be discussed with a medical