I was wondering if people with MM have Japanese ancestry or has anyone had a family member in the military station in Japan. I believed my father had the same disease( which he had multiple brain strokes until he died) but was misdiagnosed. He was in Vietnam was injured and was sent a hospital in Japan for a year. I know blood testing was not  the same as now .I believe this is one probable cause of how this disease comes up in my blood line. Any comments or ideas? I hope I didn't offend anybody by my word choices. Gotta go hands getting tingly 8)

Hi Yoki,  [smiley=hiya.gif]

This is some info that I've read on what you've mentioned: "Researchers suspect a genetic link because of the 9 percent incidence of the disease found in certain Japanese families. A gene for familial moyamoya disease has been located on chromosome 17q25 and further study of the gene may reveal the cause of the disorder." It was first mentioned in Japan in the 60's and it is not as rare in Japan as it is here in the U.S. so although they don't know the cause yet, their very well may be a link as you suggested.

You also mentioned that you were recently diagnosed with mm. Do you mind me asking if you've had surgery and where you're being treated? Can you tell us alittle about it? (Your symptoms, doctors, location, medications, etc.) Things that you say may help others with what they may have common with you.

Thanks,  [smiley=smile.gif]
Mar

Hi - My name is Paula and I have a 10 year old son who was diagnosed with Moyamoya in Septmember and had surgery with Dr. Scott in October.  I found your message very interesting in that I am adopted but know that my biological mother spent time in Japan (her father was in the Army) in the late 50's early 60's.  I wonder if there is some sort of connection?

Hi Yoki!

I am from Japanese ancestry.  My mother is pure Japanese and I know that it is passed down genetically through our genes.  My grandmother died from a stroke when I was very young and we suspect that she had moyamoya, but in the 60's it was something no one knew about.

I live in Hawaii where there are many Japanese.  To date, I know of 13 people here who have moyamoya and all of them are Japanese.  10 of them have had surgeries performed by Dr. Steinberg.  

I am currently in litigation and trying to get to Dr. Steinberg.  My HMO, Kaiser, insists that they can perform the surgery in Hawaii, however, they have yet to provide any evidence that they have done and can do the surgery.  They have prolonged my surgery for 3 months.

What is frightening is I have heard that there are other Japanese who have just been diagnosed with moyamoya, who are Kaiser members and their cases will probably be drawn out like mine.

Japanese and Asian arteries are different from caucasian arteries.  Ours are very fragile and thin.  You need to get yourself treated as soon as you can.

Hope this answers your question.  If you'd like to discuss further, I'm available.

Ganbatte Kudasai!
Pooh

Hi all,

Very interesting. My former neurologist who diagnosed me with ms, came to see me after I was hospitalized and correctly diagnosed with mm by the hospital through an angiogram, she told me that it was only in Japanese people. She was Japanese herself so I took her word for it. (For the record I am Chinese but I love the Japanese culture.)

Yet, when my girlfriend found this board, I found out that it seems to afflict people other than Japanese. Of course, I don't know their ancestry or individual bloodline. But it seems to reach as far as Europe.

I read that 1 out of 2 million people in the US are diagnosed with mm. I was told that it was very rare and the odds of getting it, was like winning the lottery. When I came on this board, I felt comforted by the available support and knowing I wasn't alone.

I guess everybody, or at least  95%, who has mm is on this board. I would say there are approximately 50-75 members on  this site.  When you think about it, that's 50-75 or so people in the world's population. Wow!

Getting back to the ms, my (former) neurologist wanted me to go on a chemo-like therapy to treat the ms. Good thing she didn't put me on that drug or it would've ruined my future especially when the ms diagnosis is in question.

She just robbed me of 2 years of my life and affected the quality of life for my remaining years, that's all. (For the record, I just turned 30 last year which I celebrated in the hospital). Is there any recourse I can take, legal or otherwise?I like to know what my options are.

Doug

I understand where everyone is coming from on the Japanese diagnosis. When the MM diagnosis was first brought up for my son, I was told it was a highly unlikely diagnosis because he was neither of Japanese decent or a girl. I have since learned that although MM afflicts more females in the Japanese population it affects more males in the Caucasion (sorry for the spelling) population. I thought this was very interesting information. I also wonder how reliable it is????
All I do know is I thank God the tech that first read my son's MRI brought the possibility of MM to the doctors mind sooner than if he hadn't mentioned it first. It still took months to get a confirmed diagnosis but at least I knew they were looking at every angle.

Hi again!

I know for sure there is no Japanese or Asian blood in my daughter or in any of her ancestors way back. Also we have no connection to any American or caucasian family- pure Swedish and way back Italian and Dutch blood so this little girl is pure European.
I think a lot about how she got this disease and I will probably never get an answer to that question and have to live with that.
Also Doug, I think there are sooo many people around the world with mm who are not members of this board and how do we find them?
How many people have the disease without knowing it?
And I think there are several people with neurological symthoms that actually have this disease but live under "unknown diagnosis" and how do we get to them as long as mm is unknown to most doctor´s?

Just some thoughts!

Take care!

Annica

It is something to make you think about how many do have mm and don't even know anything about it, thats why the letter sent to Oprah was an excellent idea it's probably one of the most frequently watch programs this would get the word out to millions, it could potentially save alot of lives. We'll see what happens. Maybe we should keep pursuing it if there is no reply. This makes me so excited nothing informs like the media.
       Nancy

Since my diagnosis of MM came a few weeks postpartum, my older sister thought my story was interesting, and she had sent a letter to Oprah as well.  
Maybe we'll hear something back-who knows.  Tricia  [smiley=huh.gif] ;;D

FYI there is a link on the links page for a Q&A session with Dr. Scott.  He talks about some possible reasons why people develop this disease.  

Hi ::)
I am so glad to know i am not alone. I was diagnosed in July 2003, after a miscarriage of twins. I was unable to talk and suffering with severe headaches, i thought it was due to the misscarriage until I went to the emergency room and I was told I had had a bilateral stroke( both side of the brain) after the second visit. The first time the told me it was just Migraines and sent me home with pain killers !!  My doctor, Dr. M. Newmark is treated me medically, with Aggrennox, Folic acid, Cozaar, Vicodin, and Flexeril. I have severe headaches, weakness and muscle spasms, memory loss, aphsia, and vision problems. I have never been sick before MM. I used to be a Middle P.E. teacher and coach- Volleyball and Swimming, but i am now on Medical leave. I am African American.

HI,
I heard from my Doctor in Japan, any genes related to mongolian is the enemy of MoyaMoya. Therefore, north american Native people, canadian init people are included along with all the Asian people are more risk than other genes.
In Japan, there is one in 200,000 are found. Ten times more than North America.
I took my daughter to japan for surgery. This hospital have over 600 MoyaMoya patient treated.

Wow!  THis is interesting!  I was just diagnosed on Monday.  I am not Japanese but American Indian.  My grandmother died from multiple (more than 10 small ones) and my dad has had at least 3 strokes so far.  I have an appointment with Dr. Martin at  UCLA on April 2nd.  

Paula

There is also a higher frequency among people with ancestors in the upper Lapland on Sweden, Norway, Finland and Russia (saame people, not sure about spelling).

jv

Hello jv!
My daughters grandmother comes from Lappland but I didn´t know it meant a higher risk of having MM!!!! Apart from Italian way back my daughter is pure Swedish and I have been thinking a lot about why she has this disease since there are no risks for MM in her history at all.
From what I know there are only 10 children with this disease in Sweden right now and a few more adults. Unfortunately I havent been able to find more than two of them, there are no lists or so of mm:ers.
How did you find out about the Higher risks in "lapplanders" it´s very interesting!

Annica

Hey everbody It's Fairbanks Im' of Japanese decent and my father was in the military he was stationed in japan .From what I've learned moya moya is carried in a Dna chromesome  I inherited it and so did my sister, its genetics . I've been trying to find somemore of my ansisters from the Sato family of the Yoshido clan ; it's taken me this long already . may you find what you are looking for quickly..
   fairbanks

Hi Fairbanks,

My Mom, her Mom & Dad are from Panama and their families are from Spain.  My Dad's Mom's family is French from Napleon's decent.  His Dad's family are Irish, Scottish and German.  None have any history of moyamoya.  But also moyamoya is not that well known in this Country or any other as it is in Japan so it would be hard to trace any family history of moyamoya.

Kathy

Hi Fairbanks,

My Mom, her Mom & Dad are from Panama and their families are from Spain.  My Dad's Mom's family is French from Napleon's decent.  His Dad's family are Irish, Scottish and German.  None have any history of moyamoya.  But also moyamoya is not that well known in this Country or any other as it is in Japan so it would be hard to trace any family history of moyamoya.

Kathy

Pupuki,

I was wondering if you were from Maui?  I am from Maui and am Japanese.  I remember my mom telling me of somebody with your exact problem.  Since my surgery with Dr. Steinberg my family has talked to many people about mm and we found people, even a little girl on Maui that was diagnosed with Moyamoya.  I think it is so interesting to know so many people with the same disease as you and me.

I hope everything works out and you are able to get the surgery done elsewhere because we considered the options here in Hawaii and they weren't that good.  The neurosurgeon that we were recommended to had done 2 mm surgeries before versus about 50 cases at stanford medical clinic.  I wish it wasn't so hard to be able to do a procedure so critical.  Just expressng my thoughts.  Thank  you.

Melly