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Hawaii Moyamoya Ohana (Read 6781 times)
Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Hawaii Moyamoya Ohana
Oct 21st, 2005 at 12:06pm
 
After being diagnosed with moyamoya and feeling all alone here in Hawaii, I decided that I wanted to one day form a support group for others like me with this "rare" disease.  My goal is to raise awareness of this disease, (especially because I was misdiagnosed, and it wasn't until my THIRD opinion that I was properly diagnosed and received the necessary emergency surgery) and what better way to do this than via the media.  

Therefore, I contacted numerous television, radio and newspapers in my state and was fortunate that 2 television stations took interest in my story (NBC and FOX).  After my story aired, I received numerous emails and calls from other local (and non-local) viewers either diagnosed with MM or who think they may have MM due to the symptoms.  Thus, my quest to organize a local support group got under way...

I have a dear high school friend Eunice who was also diagnosed with MM shortly after high school and has had successful surgeries on both sides.  She too has joined me in my dream to organize a local support group.  Since her surgery, she has gotten married, and they now have a healthy 5 year old son.  Wink

Therefore, my invitation to all those who are interested in joining the
Hawaii Moyamoya Ohana
are welcome!  ;Grin  We are planning our first gathering the 2nd weekend in November in Aiea.  I know many of you are located on the outer-islands, and even on the mainland, so I will continue to forward you emails on any updates.  Please know that this ohana is just that...for "ohana" or "family".  Family members of MM patients are also warmly welcomed.  Smiley

If you are interested in finding out more information, please email me at islandmoyamoya@yahoo.com.

Until then...Aloha no...

Me Ke Aloha Pumehana,  Smiley
Shan


Here is the link to the interivew on FOX. I can't seem to find the interview by NBC.


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« Last Edit: Oct 21st, 2005 at 12:12pm 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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Janko
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Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #1 - Oct 21st, 2005 at 3:48pm
 
Hi Shan,

This is Jan (from Kauai)...I'm thinking about planning a trip to Oahu just about that time...for my birthday.  A treat to myself every year.  I hope I'll be able to make it.  Either way, I'll let you know!!

Aloha pumehana,
Jan     Smiley
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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #2 - Oct 21st, 2005 at 11:21pm
 
Hi Jan  Smiley...

I'm so glad you found us here!  There are a handful of others from Hawaii in the moyamoya.com family too.  Hopefully you'll be able to meet them next month.  Wink  I went to see my interinst's partner since he is currently out of town, and he told me that he has a few MM patients as well...so I'll be giving him a flyer about our Hawaii Moyamoya Ohana gathering to give to them.  I believe my neuro also has at least a dozen of us now too...

Even if you won't be here on Oahu, I can email you the minutes of our meeting, etc.  I correspond with other Hawaii families that have relocated to the mainland, or who have family members who are now living in the mainland.  I'm hoping to have a neurosurgeon present at our meeting to answer any questions

I can't wait to see everyone! We'll also celebrate your birthday! ;Grin I especially appreciate birthdays more than ever now!

Aloha,
Shan
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« Last Edit: Oct 24th, 2005 at 5:20pm 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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Janko
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Take baby steps...one
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Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #3 - Oct 22nd, 2005 at 2:16pm
 
Hi Shan,

I just figured out how to use this.  The other day I was just scrolling to check out this site.  All along I was thinking "damn" how do I get on this thing.  I didn't realize how big this support network was.  Anyway, do you know of anyone else on Kauai that has MM?  If so, I would like to know how I can contact them....since everyone I talk to here has no clue of what MM is....even my boyfriend is in denial (I think).  I know he doesn't like to talk about it.  But he can see when I'm not feeling well.  He's the one who forces me to go to the hospital.  If you could let me know on this that would be great!! Smiley
 
Aloha,
Jan
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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #4 - Oct 22nd, 2005 at 10:00pm
 
Aloha Jan,

I do not know anyone on Kauai, but I do know there are a few MM patients on the Big Island, and of course many here.  Through the Hawaii Moyamoya Ohana, hopefully your boyfriend and other spouses of individuals with MM can also get together and be there for each other.  My neuro mentioned to my husband that one of his patient's spouse wanted to speak to him to see how he dealt with my situation.

If I hear anything though, I will be sure to let you know...

Have a great weekend..... Wink

Aloha no,
Shan
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« Last Edit: Oct 22nd, 2005 at 10:01pm 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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Janko
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Take baby steps...one
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Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #5 - Oct 23rd, 2005 at 1:48pm
 
Hi Shan,

I would really appreciate it if you would do that for me.
I kind of feel like I'm the only one on the island that knows what this is (other than my family, that is).     Embarrassed

Aloha,
Jan
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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #6 - Nov 30th, 2005 at 10:35am
 
Not a problem, Jan.  BTW, looks like we won't be meeting any time before the holidays.  It's a pretty hectic time for everyone to get together.  I've gotten emails from Eunice, Wayne, Melva and Maka so I'm planning on setting up something for the Hawaii Moyamoya Ohana to get together sometime in January 2006.  Wink  I'll let you know.....  ;Grin

If you do come to Oahu before then, let me know...

Mele Kalikimaka!
Shan

p.s.  Dr. Fukushima will be in Hawaii for a conference in January!!!  ;Grin  I can't wait!!!
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« Last Edit: Nov 30th, 2005 at 10:35am 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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tomg
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West and wewaxsation at
wast. What I crave.

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HowellNJ, USA, usa, 499, 119, NJ, New_Jersey
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Re: Hawaii Moyamoya Ohana
Reply #7 - Dec 1st, 2005 at 4:50pm
 
;Grin
     Hi shan,  I would love to join your meeting in Oahu Shocked
I was there on my Honey moon,  Had to see Pearl Harbour because I was born on Dec. 7th, ( not 1941  though).

Anyway I am buying my tickets tommorrow.
( lottery tickets that is)  because thats thonly way that I'll get there.

And yes I know what  Melekeliki Maka  means  Great song by Bing crosby featured in the movie  Christmas Vacation. 8)


Meleleliki Maka Shan    Tom G.
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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #8 - Dec 29th, 2005 at 4:01pm
 
Tom!!  Come on over!  We'd love to have you visit us again!  ;Grin

If you, or anyone else is in our neck of the ocean (instead of "woods" )  ;Grin please drop me a line...I'd love to play hostess and take you to dinner, drive you around, play tour guide, etc...

"E Komo Mai"..."Welcome"...

Aloha,
Shan
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« Last Edit: Dec 29th, 2005 at 4:03pm 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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Janko
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Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #9 - Feb 9th, 2006 at 5:59pm
 
Hi Shan,

Are you planning a meeting any time soon?  Just curious.  If so, can you please let me know?  I'd like to schedule a trip to Oahu soon.  It would be nice to get away from this rock.  I usually go during the holidays to do my shopping, but wasn't able to this past year due to all the trips we made when both Alan and I were in the hospital   Tongue.  We are both getting a bit antsy to get away from here.  I'm also looking forward to meeting you.

Aloha,
Jan
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maui_ann828
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Re: Hawaii Moyamoya Ohana
Reply #10 - Mar 22nd, 2006 at 9:34pm
 
aloha!

     my name is maui_ann828 i have been trying to reach people from the neighbor islands that have moyamoya. is anyone out there? please write back to let me know what doctors you have been seeing that know about moyamoya. i am kaiser patient with moyamoya and is looking for a new neurologist who knows more about what i'm going through. the neurologist doesn't have to be in the kaiser system. i have been in contact  with dr. steinberg and he recommends that i have a bilateral revascularization procedure.he said i have a moyamoya variant. i would benefit from a left sta to mca bypass graft followed by a right sta to mca bypass graft,to prevent risk of future strokes.I am very afraid of everything and have many questions from the surgery to cost to where i would be staying to how long i willbe there. everything you can think of. so i need to see someone who can answer all of my questions before i make a decision on the surgery.
i am going to see if kaiser can refer me to another neurologist that knows more. but please write back!

                                                seeking your help,
                                                          maui_ann828
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Janko
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Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #11 - Mar 23rd, 2006 at 1:19pm
 
Hi RayAnn,

How are you doing?  I have my surgeries scheduled with
Dr. Steinberg on April 19th and 26th.  I will have bilateral
direct bypasses on both my right and left sides.  They will do the right side first (the angiogram shows it's the worst side) then they will do the left.  I leave Kauai on April 12 and will return on May 8.  I will be in contact with both you and your sister (Rachel) via e-mail.

Aloha Pumehana,   Smiley
Jan
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maui_ann828
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Re: Hawaii Moyamoya Ohana
Reply #12 - Mar 23rd, 2006 at 5:38pm
 
hi jan
      I sent you an e mail hope you got it would like to know how you are paying for your surgery. how is anyone paying for their surgery. i need to get answers about if i really need this surgery or can i hang on for a while. talking with someone with moyamoya face to face  or a doctor who specializes in this illness face to face best suits me can anyone help me i'm on maui. jan you know where to reach me. anyone who wants to write can reach me here on the moyamoya site.

                                                                thanks
                                                                   mauiann
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gp
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Re: Hawaii Moyamoya Ohana
Reply #13 - May 12th, 2006 at 3:53am
 
Aloha Maui Ann ,I was wondering the same things .Did you ever find out about cost? .Aloha GP
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ntrlpwr
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have faith, the Lord is
my savior   dx 2006

Posts: 62
Pearl City, USA, usa, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #14 - Jan 6th, 2007 at 2:24pm
 
anyone in here still posting?? just looked over the log and seems kinda long since anyone posted anything in here......
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aloha,&&Brandie
 
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ntrlpwr
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have faith, the Lord is
my savior   dx 2006

Posts: 62
Pearl City, USA, usa, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #15 - Jan 8th, 2007 at 2:47pm
 
hey did anyone see yesterday's paper?? had an article in the paper in the island life section about moyamoya.  don't forget to watch medical mysteries on wed at 9pm 1/10.
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aloha,&&Brandie
 
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janicetedd
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Re: Hawaii Moyamoya Ohana
Reply #16 - Jan 8th, 2007 at 3:34pm
 
Great news.  Can you find the article on line and post it on this site?

Thanks

Janice
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ntrlpwr
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have faith, the Lord is
my savior   dx 2006

Posts: 62
Pearl City, USA, usa, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #17 - Jan 8th, 2007 at 10:16pm
 
here the link to the paper write up about the medical mysteries

http://the.honoluluadvertiser.com/article/2007/Jan/07/il/FP701070335.html
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aloha,&&Brandie
 
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Janko
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Take baby steps...one
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Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #18 - Jan 9th, 2007 at 12:00am
 
Hi Brandie,

My friend told me about this article.  I didn't get the Advertiser so I didn't get a chance to read it.  It really hit the spot.  Thanks for getting the link.

Aloha,
Jan
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Everything is not just black and white.  Open your eyes, see what the world has to offer....
 
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ntrlpwr
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have faith, the Lord is
my savior   dx 2006

Posts: 62
Pearl City, USA, usa, HI, Hawaii
Gender: female
Re: Hawaii Moyamoya Ohana
Reply #19 - Jan 16th, 2007 at 4:29pm
 
hey no problem Jan,
thanks for the call i'll try and call you later today or later this week, just been bombared with appts.
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aloha,&&Brandie
 
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