Hi all,

I'm Mikal and I'm a college student, taking a biopsychology class. We are to write a research paper and I am very interested in the MoyaMoya disease, mainly because I have never heard of it!!

After doing considerable amount of reading, both on this message board - factual responses by other members, and the MoyaMoya website (the wikipedia site is exactly the same as the information here), I still have a question that I was hoping someone could answer.

Why is it that this disease is so rare except in Japan? Is it hereditary among the Japanese, or...?

Please, help me out and post any information you think might be helpful!

Thanks,
Mikal

Hi Mikal,

Glad to hear you are doing a research paper on moya moya disease. I hope it gets noticed and published.

Mar hit it on the nose when she mentioned moya moya goes misdiagnosed or undiagnosed. Most doctors are not educated or trained to recognize or treat moya moya. As a result, the disease goes undetected. However, I understand from some doctors, moya moya is now included in the neurological borads.

Moya moya was originally thought to be an Asian disease and as Mar mentioned, it was because it was first recognized in Japan. Today, moya moya is found in virtually all races. You may have noticed that many on the board are from different parts of the world such as the UK, Australia, Germany, the Netherlands, Korea and Japan.  If you look at the guest book you will see messages from individuals or family members and friends diagnosed with moya moya. I believe there is one close to the top from the Netherlands.

I, Like Mar, do not believe that moya moya is as rare as it appears (1 in 2 million). For example, I live 5 miles outside a town of approximately 30,000. Since my brother was diagnosed in 2004, after going four years misdiagnosed, I have been in contact with 4 other moya moya patients in this area. If I go 75 miles north of where I live, I know of 4 other individuals who have been diagnosed with moya moya. I'm sure there are more than that. I simply don't know the numbers because of obvious reasons - either they haven't made themselves known on this website - and/or they have yet to be properly diagnosed.

Also, there are over 600 so-called rare diseases. Unfortunately, moya moya is in that category. When one has a rare disease, they must be their own advocate because there is little to no interest by the medical community (except Dr. Steinberg and Dr. Scott who have devoted much of their careers to moya moya)  or others unless it directly affects them. Funding for research for a rare disease is almost always hard to come by. If we want research or meaningful clinical trials, we have to raise our own funds, lobby congress etc and there still is no guarantee anyone will take an interest or anything will happen. As this board grows with moya moya victims, it may be such a thing the disease will be more readily noticed and diagnosed earlier and get the attention it deserves.

Moya moya victims range from infants to adults in their 60's. What is also unknown about the disease is why it shows up in an infant but might not show up in an individual until they are an adult.   

I hope this is helpful to you and I hope your research gets noticed. We would like very much to educate others about the disease and to get the word out.

Thank you for the opportunity to share my personal observations about how rare moya moya really isn't with you and hopefully contribute to your paper.

Best wishes and let us know if we can further contribute to your research paper.

Lore

same story as above, diagnosed in March, surgery in May.

MM is more common than we think.  I met someone who has a friend who has a friend with the disease.  The Japanese were the first to discover it, so they are more likely to recognize and understand it. 

It's great that you are writing a paper on it!!  A young friend of mine wrote one on it, as well.  I'm so thankful. I almost want to go into neuroscience just to help other MMers.  I've had so many problems and issues relating to it and it would be great to help others knowing what others are going through. Doctors sometimes don't understand how one reallly feels.