"Maui
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
MoyaMoya.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
all that! 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[1]
that looked at MoyaMoya cases in US hospitals between 1988 and 2004 that
puts the prevalence at more like 1 in 119,000[2]
people.
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