As our board grows, I wanted to have a special place for people to have the opportunity to meet.

With so many people traveling to different parts of the country for surgeries, followup appointments, etc. this board will give you the opportunity to try and meet up with others who live in the area or who will be in the area at the same time.

A perfect example of topics on this board would be families going to Stanford or Boston for surgeries/followups.

Probably the best use of this board would be to create a new topic for each notification instead of replying to this initial thread.  Does that make sense?

Let me now if you have any questions and/or problems...

-DJ

Hi Shirley

Shirley,I am not DJ, But I think you can post a lot of information on the site about the 2006 reunion.
That will give the people insights on Lake Buena Vista and surronding areas.
I lived in Clearwater for about 12 years.
It may help the people researching to find places to have the reunion.

Your MM friend
Kevin

Any other individuals with MM located in Nebraska or nearby?
Melinda

    I am in the UK. i hope to come to Orlando  for the reunion and see you all and of course ask questions. I PRAY i can afford. anyone in the UK with MoyaMoya I hv just been diagnosed in Aug 05

God Bless

Cherub

Hello Louse and Lydia

How is Lydia doing. I was in the National Hospital next   to Great Ormond when they diagnosed Moyamoya on the 25th Aug05 I was in hosp for one month and surgery was no option for me. My treatment at present is blood transfusions every 3 to 4wks co-dydamol for the headaches and bloodpressure tablet. Blod pressure has now settled and I hv never had blood pressure problems before nor headaches. No stroke. I am actually trying to get a 2nd opnion from Dr G Steinberg. Of course this is just a dream for me as the costs will determine what next.  Yes the Puff of SMOKE IS THERE IN MY SCANS !

I do pray that I go to the reunion. Like u the costs ?
Thank you very much for replying. This email business is all new to me As I am off work since Aug I found this web site trying to find what this MM is all about. Its quite depressing if the Doctors don't know much about the illness. Actually my heamotologist (sp)  monitoring the transfusions said he has never had an adult of my age to treat all his MM patients are chilgren and teenagers.  And my GP he has never had an  MM patient I am the first. How interesting I thought for me!
pls up date as to Lydia's assessment I will be praying for her.

God Bless
Cherub
esomonu@hotmail.com      

Hi There!!!!

   Anyone in British Columbia with MoyaMoya??
Washington State?? Oregon?? Montana?? Alberta??

My name is Anna i have MM and found out about at the age of 15. I had surgry done by Dr. M. Scott in Boston

i was wonderinhg if any of you live in around PA, MD, NJ, since that is all close to me also NY

i always thought that i was the only one who had moya moya
please if some of you could email me and we can email each other i would really like to make some frinds who have moy moya

my email is

sweetbaby@entermail.net

Hi Anna & Andy, Welcome to our MM family!

I’m sorry to hear you have MM, but glad you found us. This is an informative and dedicated website, with a wonderful group of people who have been down that same rough road you have, one way or the other. So feel free to post and ask any questions you may have and get to know us. I think you’ll find it comforting and you’ll meet some good people and learn in the process.

Anna, I live pretty close to you, right outside the Philly. I personally do not have MM, my niece does, but I would be happy to talk to you anytime, as would anyone else here who thought they might be of some help to you.

Andy, I hope and pray that your stroke wasn’t that debilitating, and that you’re learning all you can about this rare disease, so it will help you make good informative decisions that’s best for your particular case. That’s so important. MM is a progressive disease and needs the attention from moyamoya experienced doctors who have had MMD background and know the risks involved and the best path to take to manage this rare disease.

Again, feel free to ask any questions. No question is too small. You both are in my thoughts and prayers.

Mar

Hi there, my Christmas Present was to be told I have MM and would like to know if there is anyone in Johannesburg or for that matter in South Africa who has MM.
Its nice to know that my family and I are not alone in this!

Have a good day you all!
ASHLEIGH

hey everyone i am from  WOLLONGONG IN NSW AUSTRALIA!....
just wondering if there are any locals with moyamoya, i am seing dr stoodly in sydney hospital for my fdirst app in 2 weeks to have my angiogram done................. anty info about surgery or after problems realy welcome thanks ..
IF YOU COULD WRITE A LIL BIT OF HISTORY TO SHOW MY NAN SO SHE COULD UNDERSTAND THE DISEASE I WOULD BE MOST GREATFUL PLZ EMAIL ME..................
jamie-leehall19@hotmail.com   
thank you lots ,...

We are in San Diego California. Any MMers near by?  we really need some support.

Hi Robert, my name is Donna.  My daughter Destin found out she had MM right before her Freshman year of high school.  she had never had a stroke and only had it on one side.  Being absolutely clueless we decided to have her surgery over the Christmas break. She had her surgery on Dec. 22 and went home Christmas morning.  She went right back to school. Now, having said that I am not sure we would do it again.  It is major surgery.  She managed to do just fine but she definitely was not back 100%.  Also everyone is different. I don't know how advanced your sons MM is.  I would let the experts tell you.  Maybe you can wait, maybe you can't.  I do know that if he has a stroke it may take him more time to catch up.  My daughter is in her first year of college now.  She has it on the other side and will need another surgery eventually.  It may be soon it may be years.  We just watch it and hope she doesn't have any serious issues.  She worries about putting college on hold but ypu know what, they can still finish what they started even if it's a year later.  Best wishes for your son.  I hope he's handling it well. They are stronger than you think but it does hit them in ways we might not expect.  If you want to email me with any questions about teens with MM my address is djinkster@aol.com just be sure to put Moyamoya in the subject line so I don't think you are spam...been getting a lot of that lately.

Benjamin has had (TIA's) for about 7 years usually 1 every 2 months or so. His symptoms are the left side of his body goes numb which can last for 15-20 mins then that leads into the debilitating Migraine. At this point he can barely stay up he usually requires laying down and trying to sleep and after 3-4 hours he is usually back to hisself. It doesnt seem that they are more or less frequent, it is random and usually about 6 a year, and it usually stops him cold at whatever he is doing. He has had one since school started in August so I would think between Oct to Nov timeframe the next one will occur. He is resilant and bounces back, but he wants to do whatever we need to to help fix his condition. We are scheduled(and paid) for a trip at gulf shores alabama which he is looking forward to for Thanksgiving. I know this is serious and we are prepared as possibly we can, I just wish we had known more before now.... 7 years of this pain for my son I am really ready for it to be over.

Thanks for your comments. Robert-