This is Becky and I am Caucasian. For a while my brother was having migraines and since I am a MM they checked him for MM by doing the angio and For Now the test came back Negitive. But they are keeping an eye on his condition to see if it might develop over time like mine. My first and only stroke was when I was 22. Since then I had the STA-MCA done and things are fine. When I go to have kids I will have them checked for it to see if I have passed it on to them.

Good luck. I hope you get the results you are looking for.

Hi Nancy:
My 15 year old daughter has moyamoya and I have a distant cousin with it as well.
Tricia

Hello;
 I'm 33 years old and have MM I was diagnosed first. My mother is 53 and was diagnosed a few months after me.            Lena

Trey is the first in our family and we are caucasian, so far he is the only one, but no one else has been tested.

Michell

Brian is our only child with MM. 2 of our other children have been tested as they have all had migraines. Brian's baby will be tested when she is 4. We are caucasian.

........Kathy

I have two children with moyamoya and we are caucasian.  No other history of it in the family.

Hi Nancy,
I am caucasian and am the only one in my family with MM, however my mom died of a stroke in1991 and I now believe that she possibly had MM as she suffered from neuralgia and headaches for quite a few years. I also have an older sister who has MS, but both my 2 kids are fine and I have just been advised by my neurosurgeon to keep an eye out for symptoms  with them in the future, and if necessary I will get them tested
Moira

Hi Nancy,

We are caucasian.  Thus far, Kevin (Cubbie) is the only one in our family to be diagnosed with MM. However, we had an older brother who died 23 months ago from complications of a heart attack.  His arteries kept collapsing and the doctor said there was nothing in his arteries to cause that (like a blockage). Unfortunately, we don't know if perhaps he had undetected MM as he died prior to Kevin's diagnosis of MM or if his arteries were collapsing from some other condition causing his entire body to shut down.

I know this doesn't answer your question but your question is interesting and Iwill keep watch on the other post.

Hugs,

Lore

Nancy, I'm glad you asked,it will be interesting to read the responses to this.
 My daughter Kathleen is 8 she was diagnosed 3 yrs ago with mm.To my knowledge she's the only one in my family with this diagnosis. I'de like to add though that my family history includes a lot of neurovascular problems.My dad's, dad died of a stroke at a fairly young age,My dad died from a Circle of Willis aneurism that ruptured,(this type of aneurism is heredity),My sister was operated on for the same type of aneurism(it was clipped).We have a very strong history of Migraines.My dads mom for as long as I could remmeber suffered from Migrains and what they then called "spells" dizzy and dissoriented.She died very old but also had a Circle of Willis aneurism.I'm probably one of only 2 of my 6 siblings who does not have migrains.Even a few of my cousins(on my dads side) have migraines.Also his 2 sisters.Just a coincidence??? I'm not so sure.....
Mary Grace

Hi!

Could someone please tell me what you here mean by "caucasians". When I look it up I get more than one answer/explanation of the word.

Annica

White people

This is amazing! :D  However, it makes me a little nervous. :-/  It makes me think that the 7-10% number is BS!  It also seems that even if MM is not inherited that defects/weaknesses in the vascular system might be.  My family has been okay as of yet, but ummm....this makes me think it just hasn't reared its ugly head yet.  What about any children I may have as well? :'( SCARY!

In order to squash this scary prospect I must question the theory just for a second. [smiley=confused2.gif]  I would be curious to find out how many non-caucasians frequent the message board and then to hear their heredity statistics.  
Stephanie

Interesting topic!

I was surprised how many Caucasians I saw when I first found this website.  I am half Caucasian and half Korean.  I don’t really no my mom’s side of the family (Korean side) and since I was just diagnosed last month my other side of the family has not been checked yet.  But as far as I know, there have been no strokes on either side.  

Monica

I, myself, am Korean, but being adopted by my French-Canadian parents, got me my very French name of, Renee, lol! ;;D

Despite the large number of Caucasian posters...as far as I know, MM is still more prevelant in Asians.

My son is 1/2 Korean (from me) and 1/2 Caucasian (from his dad).  I had him tested at age 6, and he was negative at that time.  Now he's 12 and so far, so good, although he has always suffered from headaches.

Renee

Hi again!
I remember when I was in California for my surgeries I was being interviewed by the head of the Stanford Media/Publication Department.  We, my family, the interviewer (who is very well-researched on MM), and I were discussing the published facts on MM.  She explained that the thought that it is mostly an Asian disease is being greatly questioned.  She said that most publications readily available on the web are outdated and still define MM as a disease that primarily effect young, Asian females. She said that this assumption, MM is an Asian disease, may be b/c Asia/Japan to be exact has done the a lot of the research on the disease.  My family and I found this to be very interesting and I strongly agree that the number 1 out of 2 million is a joke!  

Just to add an interesting note, the interviewer was also the pertson who helped write and get that fantastic article about MM in the NY Times!  

Take care, ;;D
Stephanie

:D :o :D ;) :o

This is a fascinating topic.

I'm a 55yr old female caucasian of Scandinavian extraction. Had my first stroke (and realization of mm) at age 49.

My aunt has caroted arteries that narrow and prevent blood flow. Her doctors open the arteries  to allow more blood flow. This is a congenital situation for her. She hasn't been diagnosed with mm, but it sound very similar. She also has extra arteries  into her kidneys.
Her father (my grandfather -- who died way before I was born) had severe headaches. I  had weekly migrains as a child and teenager.

These hereditary links, and possible clues to mm, are so valuable.
LA

Don't know if it is hereditary.....both my mom and dad are fine....the only reason that my doctor went looking past the "its only stress or headaches" is due to the fact that my paternal grandfather died of a stoke/anurism at the young age of 37. Luckily for me, Dr. Dennis studied at Columbia and new enough about MM symptions to recommend the MRI/MRA and EEG.... I guess I am extememly lucky that he opted to not ay attention to my previous studies (I was hospitalized about 2.5 years ago for the same symptoms, MRI came back clean....diagnosis with pacnic attacks and sent home on a couple of "mood adjusters". Thank you again Dr. D.

Greg

Hi Everyone...

I also wanted to mention that I believe a lot of cases may not be properly diagnosed or go untreated (like I did by my first two neurologists), which may also be a factor of who is primarily affected by this disease.  I know that in the past, reasearch was of MM was primarily done in Japan, so if they were more "open" and knew more about the possibility of this disease, then they probably made more diagnoses of MM than in the U.S., etc...  I still think more research, gov't $ and awareness should be done in the U.S.....

Just my  [smiley=twocents.gif]..

Take care,
Shan

This is Becky,

My first nurologest said it was Impossible a White person could have MM bueacus it is Only found in Japan. I said okay let me have a second opinon. She sent me to the Mayo clinic and They said my First nurologets needed to open her mind to the possibilites that the Japanes discovered it and they have tested for it more offten to figere out why so many of their young one have had a strokes and stuff. Not to base things soley on a person heritage.  [smiley=twocents.gif]

Well said Shan and Becky!!!!! I agree with both of your theories.  I would say that we should focus more on the heriditary factor and not so much on the race factor.  Does anyone agree?  What are your thoughts?
Love all,
Stephanie

A very recent extract from MedLine:

Childs Nerv Syst. 2005 Sep 30; [Epub ahead of print] Related Articles, Links  

Clinical features of familial moyamoya disease.

Nanba R, Kuroda S, Tada M, Ishikawa T, Houkin K, Iwasaki Y.

Department of Neurosurgery, Hokkaido University Graduate School of Medicine, North 15 West 7, Kita-ku, Sapporo, 060-8638, Japan, skuroda@med.hokudai.ac.jp.

OBJECTS: This study aims to clarify the genetic background of moyamoya disease by comparing clinical features between familial and sporadic cases to reveal the responsible genes for familial moyamoya disease. METHODS: This study included 155 Japanese patients with moyamoya disease, which included 24 familial cases (10 family pedigrees) and 131 sporadic cases. Clinical features were compared between the familial and sporadic cases. RESULTS AND CONCLUSION: A female preponderance was significantly more prominent in the familial than in the sporadic group (P=0.0421). Mean age at onset was significantly lower in familial than in sporadic cases (P=0.004). In eight parent-offspring pairs, mean age at onset was significantly lower in the second than in the first generation (P<0.0001). These results suggest that familial moyamoya disease is associated with genetic anticipation and female predominance and that a genetic analysis study focused on expanded triplet repeats may clarify the pathogenesis of the disease.

Just to throw some spice into the pot...I'm Native American!  From New Mexico! I was originally diagnosed with MS and changed to MM in Aug '05.   [smiley=huh.gif]. Before I was diagnosed, I was constantly being asked if I was Asian.  My father just had triple-bypass surgery 2 weeks ago!  Turns out he has highblood pressure and high choleserol.  No one else in my family has MM.  

lsuvia

i am caucasian i have 4 children 2 of which are twins and 3 of my childen have moyamoya 1 of the twins does not have myamoya Dr, Scott seems to think there may be a gene for it they have been{Dr, Scott's team] has been taking blood samples from everyone in my family but we are the first to have any signs of moyamoya

Sandy,
What a challenge for all of you!!!  What type of blood work is being done on the family???
Thanks,
Roni
eolsen6400@aol.com

 i am not sure its just a study its not just blood work on me and the kids its everyone on my side of the family caUSE MY OLDEST DAUGHTER HAS A DIFFERENT FATHER FROM YHE OTHER TFREE SO THAT GAVE DR. SCOTT THE IDEA IT HAS TO BE FROM MY SIDE OF THE FAMILY BUT LIKE I SAID NOONE HAS EVER HAD ANY PROBLEMS BEFORE UNTIL I HAD MY CHILDREN I HAD A COUSIN TO DIE OF AN ANURISIUM AT THE AGE OF 7 BUT HERS WAS SUDDEN NO PROBLEMS WHAT SO EVER TO EVEN SUPPECT SHE HAD ANY MEDICAL PROBLEMS BUT DR. SCOTT SEEMS TO DISAGREE HE THINKS THAT SHE MAY HAVE HAD MOYAMOYA AND WAS MISS DISGNOSED SO I AM NOT SURE WE ARE HAVING A HARD TIME GETTING EVERYONE IN THE FAMILY TO DO THIS

I just found out that some of my older family members have died from strokes but they were too old to realy check for something. Did that artical said that the probability of MM goes down with every generation? If so then how about the sivarity of the MM?

I guess my question is of all of you who have MM and have children with MM are they Better or Worse then you? Did they find out about it sooner? How bad was the inital stroke? Do they have more lasting problems than you?

I want to have kids but I Do Not want to pass this on.
Becky

I am not caucasian, but hereditary issues is also a concern for me.  My mother just had an MRI done and we got the results today.  It was negative for Moyamoya, but it did show many...(like over 10) strokes and 2 anureysms!  I didn't notice the use of the word "TIA" though, like I noticed in my MRI/MRA reports.  I need to do some research...I take it that there are different kinds of strokes?  "TIAs" are just mini-strokes, right?

Anybody knows?  [smiley=huh.gif]  Hmmmm....

Shan

Shan,
My understanding is that TIAs are transient ischemic attacks while strokes tend to not be transient, meaning they can leave permenant damage.  Here is a very helpful website about both TIAs and strokes!:

http://www.stroke-tia.com/stroke-tia/prevention2.html

Hope this helps, Shan!
Stephanie

Hi Stephanie,

Thanks so much!  I'm on the site now waiting for the video to play.  I was just too overwhelmed to do any more research on the internet last night.  I'm hoping that my bout with MM will encourage her and keep her spirits up and she deals with this devastating news.  Luckily her aneurysms are small, so no surgery is currently needed.

I was just curious to find out more about TIA's because my MRI/MRA clearly stated "TIA's" but my mom's mentioned "ischemic attacks."

Sorry for straying off the subject Nancy... :P

Thanks again, Steph!  You're always so helpful!

Take care,
Shan

Please everyone!
My husband and I are debating on wether to have a baby or not, and if it does seem to get worse with every generation then we may deside to cut the chain. I don't want to put a child through all of this. He has some hereditary cancers to bring in the mix and if MM is a worsing genetic mutation then I don't know? I also have some heritary cancers to bring in to the mix as well that differ from his. But we were thinking about a baby (in the future) before my stroke and MM discovery, but now we are not so sure.
Becky [smiley=huh.gif]

Becky,

I'm sure many with MM have/are considering the same thing as you.  I have a girlfriend here with MM, and since having 2 surgeries (one on each side), she has gotten married and has a healthy 5 year old son!  ;;D Have you discussed this with your doctors? Neuro? OB? Internist?  It would be good to hear what they have to say.  I'm thinking if other health issues are present, then those will also be a deciding factor.

Take care,
Shan

Shan,
Wow that is great for her! My nero is looking into it and my OB is will see if it healthy for me ie natural vs c-section if thing look good. But no word yet. I am in school and want to finish with that before baby. I am still young enought where the clock is just started to tick.
Becky

I am just curious, what are all the other nationalities of the people that are on this list. The reason I ask is because I am not caucasian and I am not Asian. I am Middle Eastern from Iran. This has come as a shock to my family and to my doctors. So can anybody shed some light on this topic for me? Just food for thought!!

yassi

Becky,
I had a baby after my MM surgeries - I have two kids (one is now 10 and the "baby" is now 2.5) I was concerned about this too and my neurosurgeon said that the incidence of familial heredity is about 9 - 10% and that I could get kids tested at a later stage, and just keep a very close eye for any warning signs. I was under strict orders though when I was pregnant from my Neurologist, Neurosurgeon and Ob NOT to have a natural birth, so I had an elective caesarean which suited me fine, as there was no way I wanted to go through a natural birth again!

In answer to Yassi's question - I was originally born in South Africa and I quess you can say my heritage is Anglo saxon as my mum was South African but had Scottish heritage and my dad is English.

Moira

Thanks moyamoi. I am in school right now and want to finish that up before thinking about kids.

As far as my Haritage: I am 1/4 Netherlander (Dutch), 1/4 English, 1/4 Irish/Scottish, and to make up the rest of the 1/4: (Welsh, Sweedish, Checklizvakin (sp?), German, French Canadan Indian, Norwegan)

I am a good old Mutt!
Hope this helps.
Becky