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LisaH

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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female

How did you find this board?
May 23^rd, 2004 at 1:46am

Tonight I did a Google search on Moya Moya Disease basically just to look for any new(er) info on MM. While I did find a lot more info and interesting articles regarding the disease than I had seen in the past, I never did come across a link to this message board. Smiley

(Side note- DJ what can you do about this?)

So, I was just curious, how did everyone find this board?

My response- I was lucky that I "found" DJ before he even started this board! Smiley

Lisa

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« Last Edit: May 23^rd, 2004 at 1:48am by LisaH »

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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DJ YaBB Administrator Offline Been there, done that... Posts: 721 Wichita, KS Gender:	Re: How did you find this board? Reply #1 - May 23^rd, 2004 at 5:20am Try doing a Google search for "Moyamoya disease", with no space in Moyamoya. That brings up several links to the site...
Back to top	Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle! IP Logged

Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: How did you find this board? Reply #2 - May 23^rd, 2004 at 9:32am I just did a Google search on Moyamoya and found the board, how ever I can't remember if I thyped it as one word or two . Maybe I did it both ways.
Back to top	I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&& IP Logged

Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: How did you find this board? Reply #3 - May 23^rd, 2004 at 9:40am My family found it through the internet somehow we were so out of our mind at the time and would never even leave the hospital to do it within 2 or 3 hours my family was there with quite alot of pages on MM. They found D.J. Probably through Google. Nancy
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ariannasmommy Experienced Poster Offline ^i^Angel Arianna^i^ Posts: 178 Herrin, USA, usa, 361, 171, IL, Illinois Gender:	Re: How did you find this board? Reply #4 - May 23^rd, 2004 at 11:03am my sister in law found it and showed it to me. wish I would have found it sooner
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Annica Experienced Poster Offline My daughter lives with mm Posts: 173 Stockholm, Sweden, europe, 317, 154 Gender:	Re: How did you find this board? Reply #5 - May 23^rd, 2004 at 3:15pm I found it through Googles, AltaVista or some other searchsite. I found it just after DJ started it as I was hungry for info and on the internet daily and all of a sudden it was just there! Heureka!! Made and makes a lot of difference to me and my family! Annica
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LisaH

Senior Poster

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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female

Re: How did you find this board?
Reply #6 - May 23^rd, 2004 at 3:54pm

Okay, tried the search with just moyamoya disease and still didn't get it. I don't know why- probably just me. Undecided

But then I got to thinking again! Smiley

Why is the name varied so much? I did research and everywhere I looked it was spelled/coined differently. Moya Moya, MoyaMoya, moyamoya. Even on ONE article I read they spelled it 3 different ways! Dr. Steinberg even writes it different ways. No wonder no one knows much about this disease- they still have yet to figure out the exact thing to call it!

Then, of course, you've got MM Disease and Syndrome or just plain MM. I once heard the difference between "disease" and "syndrome" was that one was idiopathic (meaning there was no found source of why) and that the other meant that the MM was a link to something else (like Down's, injury, Sickle Cell etc.). I can't remember which meant what though. Anybody?

One thing I found, at least since I was diagnosed 2 years ago, there is A LOT more info out there than before! Some of it wrong and a lot of it very confusing, but nonetheless, more info! That's a good thing!
Smiley

Lisa

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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: How did you find this board? Reply #7 - May 23^rd, 2004 at 6:51pm Hhmmm, can't figure out why it's not comming up for you. I did a search, earlier today, for Moyamoya and it popped up with-in the first few chioces. When I spelled it as 2 words however, it never showed this group.
Back to top	I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&& IP Logged

Matt New Poster Offline Posts: 4 Cape Coral, USA, usa, 452, 293, FL, Florida Gender:	Re: How did you find this board? Reply #8 - May 25^th, 2004 at 8:17pm I found this website on Google as well. A awesome site! matt_kenny
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Sara Experienced Poster Offline I am 15 years post-op and loving life! Posts: 208 Houston, USA, usa, 291, 279, TX, Texas Gender:	Re: How did you find this board? Reply #9 - May 26^th, 2004 at 5:02pm I just typed it in Google as "Moya Moya disease" and it is on page 2 of 10 that it pulls up as results... I think I originally found it that way, too.... And I agree, a lot of what you read isn't right, and they make it sound TERRIBLE. Not that it is a cake walk, but it is scary if you've just been dx. Sara
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DianeMain

Experienced Poster

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My sister, PatM, has moyamoya.

Posts: 126
San Jose, USA, usa, 23, 160, CA, California
Gender: female

Re: How did you find this board?
Reply #10 - May 27^th, 2004 at 12:31am

My sister told me about it in an e-mail to a bunch of us right around when they decided to schedule her surgeries.

I just typed "moyamoya" without the quotes into google, and it came up as the third link. It was on the first page of 10 links . . . out of "about 61,600 for moyamoya."

Maybe it depends on the computer? Not sure if there's a way to change search settings in google's main screen.

Diane

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"Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us." -- Bill Watterson (1958 - ), cartoonist, "Calvin and Hobbes"

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