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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › How Prevalent is Moyamoya Really?

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How Prevalent is Moyamoya Really? (Read 17089 times)

cass/kate

Experienced Poster

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: How Prevalent is Moyamoya Really
Reply #25 - Jun 24^th, 2008 at 5:32pm

Hey MMers !!

This is not exactly about prevalency of MM, but exciting non the less.

Today I was working in the cafe and a local doctor (internist) noticed my blue bracelet. He saw Moyamoya and said, "Isn't that some kind of rare brain disorder?" I was thrilled that he had heard of it, proceeded to discuss it and gave him a bracelet. He promised to look it up and share information with several of his doctor colleagues. This is the first doctor in Dallas whom I have spoken with that actually knew (sort of) what MM is. WE ARE MAKING PROGRESS FOLKS. YEAH !! ! !

Smiley

Cass

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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: How Prevalent is Moyamoya Really? Reply #26 - Jun 28^th, 2008 at 4:26pm I'm still a rarity in Rochester, NY it seems. My neurologist and my cardiologist still have no other cases with Moya Moya. Makes me feel like a unicorn sometimes.
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KTiller

Senior Poster

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Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: How Prevalent is Moyamoya Really?
Reply #27 - Jun 28^th, 2008 at 7:29pm

Hey -
In just the last two weeks I've met two more people with moyamoya living in the Seattle area - Yikes! Maybe the NW is the moyamoya capital of the world, but I think it's just the stats that need amending. Someone told me we have more cancer here than the rest of the country. Must be the lack of sunshine Wink

.
The National Institute of Health website states that moyamoya is a rare disease, yet they have given a grant for a controversial study. Do they typically give grants to study rare diseases? Maybe they are about to change it's status to NOT SO RARE ...
Kim

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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: How Prevalent is Moyamoya Really?
Reply #28 - Jun 30^th, 2008 at 9:03pm

Aloha Kim,

I personally don't think it is as "Rare" as reported. After doing being interviewd on 2 of our local news channels (FOX and ABC), I received many calls and emails from other MM patients here in Hawaii! In fact, my schoolmate from my small local private school was also diagnosed with MM and was actually dianosed and had her surgeries a couple years before me!

I was misdiagnosed--as I am sure many others are
Embarrassed

I've spoken to many medical professionals that have asked me "What is Moyamoya?" after I tell them my medical history.

I am all for appropriating funds towards this disease! ; Grin

Take care,
Shan

« Last Edit: Jun 30^th, 2008 at 9:06pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: How Prevalent is Moyamoya Really?
Reply #29 - Jul 2^nd, 2008 at 6:28pm

Understand where the confusion may have been--and don't believe shgr meant to ruffle any feathers. Tongue

One of my friends here in Hawaii had more than 1 surgery with Dr. Steinberg. (One was a "corrective" surgery to the initial one). Nonetheless, what is even more shocking is that after 3 surgeries, she decided to seek additional opinions due to her recurring symptoms post-surgery and was even advised that she may not have MM afterall. She may another form of vasculitis. Embarrassed

One thing to remember, many MM pts send their films to more than one MM specialist, so they may be identifying the same pts--

Bottom line--there's really no number identifying how prevalent MM is... I believe if a data base is created or if one already exists, and neurosurgeons across the world accurately report their cases, then we could at least get a "ball park" figure. (i.e. Just as we do with worldwide flu cases each year, etc..) I guess that would be a start...

Take care,
Shan

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: How Prevalent is Moyamoya Really? Reply #30 - Jul 2^nd, 2008 at 7:28pm p.s. Way to go Cass! ;
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