Moyamoya.com
Internet support for those diagnosed with Moyamoya Disease



"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.
 

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 families.

Click
Video about Moyamoya
(requires Windows Media 7 or up)
Upgrade WM player here

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 video from 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!

Welcome to our family!

 


 
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DISCLAIMER: 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 professional!

 

Page last updated on:
January 01, 2013

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References

1. Citation: Lee DJ and Liebeskind DS (2011) Characterization of Inpatient Moyamoya in the United States: 19882004. Front. Neur. 2:43. doi: 10.3389/fneur.2011.00043

2. Based on average population of the US (census.gov) between 1988 and 2004 (267,265,987) divided by the number of cases referenced in the above article (2,247).