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.  ;)

Therefore, my invitation to all those who are interested in joining the [glb]Hawaii Moyamoya Ohana [/glb]are welcome!  ;;D  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=hug.gif]

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=hug.gif]
Shan

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

http://www.khon.com/khon/display.cfm?storyID=6918&sid=1152

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=thumbsup.gif]

Hi Jan  [smiley=wave.gif]...

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.  ;)  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! ;;D I especially appreciate birthdays more than ever now!

Aloha,
Shan

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=bow.gif]
 
Aloha,
Jan

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..... ;)

Aloha no,
Shan

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).     :-[

Aloha,
Jan

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.  ;)  I'll let you know.....  ;;D

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!!!  ;;D  I can't wait!!!

;;D
    Hi shan,  I would love to join your meeting in Oahu :o
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.

Tom!!  Come on over!  We'd love to have you visit us again!  ;;D

If you, or anyone else is in our neck of the ocean (instead of "woods" )  ;;D 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

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   :P.  We are both getting a bit antsy to get away from here.  I'm also looking forward to meeting you.

Aloha,
Jan

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

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=hug.gif]
Jan

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

Aloha Maui Ann ,I was wondering the same things .Did you ever find out about cost? .Aloha GP

anyone in here still posting?? just looked over the log and seems kinda long since anyone posted anything in here......

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.  

Great news.  Can you find the article on line and post it on this site?

Thanks

Janice

here the link to the paper write up about the medical mysteries

http://the.honoluluadvertiser.com/article/2007/Jan/07/il/FP701070335.html

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

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.