I wanted to take a second to share with you some of my feelings about this site... the reason I've upgraded the old "message board" to this new type of forum... and some of the reasons I did it.

When I was first diagnosed with Moyamoya, I immediately jumped on the internet to see what I could find out about the disease (mainly so I could figure out what exactly I was going to be dealing with).  Secondly, I wanted to find others who were going through (or had already been through) the same emotions I was experiencing being diagnosed with such a rare disease.  I wanted to communicate with other people "out there" who were knew exactly what I was going through.

Much to my dismay, there was virtually NOTHING out there at the time which could give me a positive outlook on my future with Moyamoya!

Sure, I found a lot of generic information about how Moyamoya could be a fatal disease...  how there wasn't a lot known about the disease... blah, blah.  But the one thing I found difficult to find on the internet was actual communication with other Moyamoya sufferers and supporters!  People who had "been there, done that"!  It left me feeling alone and still with so many questions!

I remember finding that 1-800 (turned into a 1-900) phone number to the supposed "Moyamoya Support group" in Iowa that led to nowhere.  I remember the disappointment I felt when there wasn't anyone there for me to talk to.

I also remember the absolute comfort I felt when I was finally able to run across a few folks on the Harvard site (and I do mean a few) who I could actually communicate with.  I met Kathy Van Meter and her son Brian (who had already had surgeries at Stanford), Tricia, and Elaine C.  It was the first time I actually felt like I wasn't in this all by myself and it completely changed my attitude towards my future with Moyamoya!  THANK YOU Kathy, Brian, Tricia, and Elaine!

As a sufferer of a rare disease, I can honestly tell you one of the most comforting feelings in the world is knowing you aren't the only person in the world who is experiencing the same feelings.  Those of you who've been there know exactly what I'm talking about!

With that being said, I think this new forum can make a real difference to others who find us.  Not only to other Moyamoya sufferers themselves, but to their families and friends who are searching for answers.  This format will give us the opportunity to communicate more easily and become more of a support group for others out there who feel like they are "all alone" when they find out there is something wrong with their brain.

I don't want anyone to have to EVER come to the internet searching for information on Moyamoya and feel the same lonliness I felt the first time I got online looking for support!

WE can change that!!  We can make a difference!!

Respectfully,
DJ

DJ, Thank you so much for this site! I was in the same place as you a year and a half ago.My baby was diagnosed with this rare disease and there was no one to talk to.I mean no one at all who had been there.It was so scary for us. The only thing we could find was a bit of medical info. Some of which was very dismal and untrue. We tried to sort it out, and read just the positive. I so wish this site was there for us.But now I feel so good to be able to give support and a possitive outlook to others.Kathleen had some very bad strokes, but has come so far in a year and a half after surgery that I love to share it and help parents see how successful and important the surgery is.Also if their child ahs had strokes they can know how much recovery is possible.Thank you again for your determination to get these messages out there.
Mary

DJ,
I feel real lucky that I found this site so soon after Tyler was diagnosed.  ;D It has been a long road and having you and the others there when I need someone has really helped. Tyler has had his follow-up testing and I hope to recieve the results this week. Thank You for all the help.
Rena

Rena, glad to hear you were able to make the trip back out to Stanford for Tyler's follow up appointments.  Definately let us know the results when you get them!  Hope all is well!   :-*

DJ

Hi- glad to have found this site.
I was diagnosed with MM after a major stroke at the age of 10. (im 34 (ugh) now and had bypass at the age of 12. I did not go to a dr for this since i was 19. Finally I found a great neurologist who did tests and said that I have good blood flow. Im newly married and because of your wonderful site Im getting useful info on having children.
I guess it really is true- With God- All things are possible. I never thought I could even think of having a child of my own- maybe I can.
Love this site. When I was diagnosed- there were 6 papers on MM. My Mom had to call Germany and Japan to get them. This site is a gift from God.
 [smiley=sayyes.gif] [smiley=sayyes.gif]

Mazzi...welcome to MM !!!  So nice to have you with this family.  Yes this is an awesome website...never once felt alone the entire time I was dealing with my daughters pre-testing, then surgeries, then recoveries which turned into unbelievable nightmare for a while with all the spells she had....but I always had someone on this site comforting me....so easy to access, so easy to look further...and helped me go to be at night, too with ease.
Look forward to more posts from you...hugs,  CarasMOM

DJ,

In 1997 when I was diagnosed with mm, the 800 # in Iowa actually helped me:  They gave my husband the names of three women approx. my age & their phone #'s. Since I couldn't speak very well at the time, my h called them (one in N. Dakota, one in Texas & one in Michigan )  They would e-mail info about Stanford  (two were Dr. Steinberg's patients) & they were my life savers!!!, just like you are today, with your fantastic mm website!!!!!!!!!  THANK YOU FOR ALL YOUR HELP, DJ!!  YOU ARE ONE OF OUR EARTH ANGELS!!!  deb

Hello!

I couldn't agree more!  When we found the cause of my mom's stroke (April 2004)  was MM, there was little the Dr's could really even tell us.  Then we were sent to a neurosurgeon in our state who was of even less help and didn't seem to care much about us or our case.  If it weren't for all the wonderful people on here and all the good information everyone has and experiences, we would not have known there IS something that can be done and because of the site, found Dr. Steinberg and have had two surgeries.  It's been so wonderful.  And now I really enjoy throwing in thoughts to support others and still send questions I have about random things after surgery/stroke and it's just so comforting to receive suggestions back from those who are experiencing the same thing.  So wonderful, thanks DJ!

-Connie

Thanks so much, your an angel sent from heaven. You have helped so many people and give people hope and peace. I know everything will be ok and your a FANTASTIC person. May all your dreams come true

Love you bunches and bunches, Saundra

DJ   Thanks for the great site . Our daughter is diagnosed MM for about 3 months now .Sharon is 6 years old . We have been surching everywhere but there is almost nothing to findabout MM .I hope we can learn much on your site  .  Thanks

DJ
You have done such an amazing job with this site, it will help so many people. I remember when Amanda was diagnosed with moyamoya in March 2000. We went searching for any information we could find and there wasn't much to be found. It is so much better to hear information from people who know what you are going through and have experience with the disease. We are all lucky to have you. I hope you know how much myself and my family appreciate the time and effort you have put into this site.
Thankyou  
Tricia :)

Tricia,

On the contrary, I must say THANK YOU to you!  You were one of the very few people I was able to talk to over on the Harvard site before I had my first surgery.  You pointed me to a family who had already been through the surgery, with Dr. Steinberg no less.  You can't imagine what an inspiration you were to me, and if we hadn't met and talked about the lack of information and support out there, this site may have never made it to the web!

I remember what an INCREDIBLE feeling it was for me actually getting to talk with other people who had already been in the same shoes and wanted to aggressively pursue the same opportunity for others, like us, who found themselves in the same positon when looking for information, support, and understanding when they had to learn of the word 'moyamoya'.

THANK YOU!

DJ

8)DJ you have done a wonderful thing. Created a place where people of all backgrounds,Rich and Poor can congreate and tell their stories and hardships and get feedback on what to do!
It was through this website I made contact with Dr.Steinberg in July of 2004 and to be in Stanford on May 1, 2005,I had peoplegiving me strength all the way!

DJ Be Proud!
I am not computer savvy.But You given us way to commuicate

Kevin Allen (cubbie) Thanks For Your Hard Work!