Hi everybody,

I know I don't come here very often,  but I am too busy with other things.
A wihile ago I started thinking of writing a book about moyamoya with lots of information about different surgery's, the risks of each different surgery, sypmtoms, doctors who perform sergery and in which country ( I don't know if I need their permission for that, so I hope you can help me with that)
for the woman risks with having babies, what you should en shouldn't do, I also need stories of moyamoya survivors so I can make clear what the differences are, and that not every moyamoya patient is the same, etc...

If you have any idea's what else I can write about, don't hesitate to inform me on that, just give your opinion.

I need your help with this, or else I will never be able to write it. It will be written in Dutch ( my own language) and I have no idea if I will be able tp publish it and if people will buy it since it is such a rare disease.

Thank you for helping me out on this...

Lilian

Dear Lilian,

It would be a great idea for you to write a book on moyamoya in your native language. I am writing one in English. This book is one that will help moyamoya patients but also one that would be given to the medical field so that EVERYONE will know about it. I would be willing to help you and also I have a publisher. Your book may be printed too.

E-mail me at my main e-mail:
Runity@aol.com

We can talk about it!!!

yassi

hey this is a great idea, a lot of people have been suggesting this to me.
i'm currently documenting all of my symptoms and experiences etc.. right from the beginning (partly so when every 'new & keen' doc asks me what i presented to hospital with i can tell them to read the book! SO sick of repeating myself!)
anyway yeah wicked, email me emily@bomba.com.au, i'm fairly well obsessed with it all and am constantly researching.. so i'm keen!

Hi Everybody,

I too don't log on as much as I would like to but life keeps me too busy.  
I would love to participate in any of the books that you guys are writing.  I think writing a book is a great idea and although it may not be a best-seller, I think it's important.  I'm an American living in Germany and I can tell you that nobody here know's about MM..even the "MM Specialist" didn't know jack about MM.

Email me at moeblair@yahoo.com if you guys would like to talk in more detail.

I hope everyone is going well.

Monica

  I think it's a great idea.The one thing I find that's lacking in my search for answers is the "real life" things that affect the everyday life of someone with MM.As you amy have read on other threads I'm always looking to the you all for what you may be feeling even years after surgeries.These things are not in any medical information.things like how tired you may feel or the headaches,or even your reaction to hot and cold weather.What your bad days and good days are like and what you do about it? Our little MM patients and non verbal can't tell us what's going on.One thing I would like to see included also are the very small signs that we only see in hindsight.It seems it can be difficult to convince a doc that these smallthings aren't just a regression in a child who already presents witha  dissability.The first thing we were told is, it was just a regression after a Christmas break of no therapy(even though kathleen ahs never shown any regression on breaks).Feel free to ask away if I can add anything to your works.
Mary Grace, mgrace5@nycap.rr.com

It has been a while since I last visited here, but I have been really busy!!
Sorry for that!

:)I wanted to say that you are right not all of us are the same w/mm  :o My first surgery (was supose to be a brain bypass) hadn't been DXed yet [smiley=huh.gif] it was supose to take 5-- 5 1/2 hours and after about 9 hours the surgon came out and told my family the surgery didn't take and that I had a very rare brain diease called moyamoya (WHAT) and there was one thing that had been done in children with sucess but he had never heard of it done on an adult, so after 13 hours and bening in a coma for two weeks I had the brain of a seven year old (that lasted for almost a year) I have No Balance, I stumbled at my youngest sons house and was embedded on a steel rod on his weight bench my son pulled me off and I had 10 stiches and spent 5 days in the hospital on IVs for infection,,,,,I could write a book on everything that has happened to me,,,,,,I fell backwards down 3 steps going into a house and landed on my head and had 10 stapples and fell backwards 2 days later hit the same spot (concusion) and I have broken my left foot 3 times same bone........broke most of my toes on my left foot after my first stroke............ :)Anyhow MM effects us all differently,, I am one of those that has progressed Alot and have either slow or no blood flow in my frontal lobes and will be getting a angiogram soon........Good news 2nd surgery went Much Better 5 & 1/2 hours 4 days in the hospital and was out shopping the next day..Let me know if any of you do a book I would buy it.....

Hi Everyone,

I haven't forgotten about a book about moyamoya. I am actually going to try to write it as a part of my dissertation for my Health psychology  PHD degree. My professors are for sure going to know about moyamoya. My goal is that every doctor in the nation will learn about this disease and stop misdiagnosing us all. I was misdiagnosed as having psychosis and went through torture it felt like till my primary doctor ordered the right test. This is because my moyamoya disease symptoms mimicked the symptoms of psychosis and schizophrenia. I was on 10 different psychic meds that almost killed me. I am currently not on any psychic meds or any meds for that matter.

I would like to work on this book with anyone who is interested. We need to share the awareness. They need to know that not all of us have the same symptoms and it manifests itself in different ways in different people. Just because others don't share your symptoms does not mean that it cannot happen !! There is always a first for everything!!

Just an FYI incase anyone hasnt done this...  I searched ebay for MM  and a few books came up. Some were very expensive.  For the parents out there who's children have MM, there was a book tittled: Raising a Child with MM.  Or something along those lines.  The other book was basicall all things regaurding MM.

I definitely agree that there is a need for physicians to have base line knowledge of MM.  In my opinion, it is far too often mis/undiagnosed in the West, either b/c docs have never heard of it, or b/c all they know/believe is that it is a disease that affects primarily Asian patients.  It seems that at a minimum, neurologists in training could be better informed about the disease, and a screening tool developed, based on patients who present with specific symptoms.

Even with my Asian child, treated by a Western  neurologist, he simply refused to believe she could have MM and was "surprised" when the diagnostic testing did indeed reveal that is what she has. 

Yes, MM is a rare disease but I wonder...is it really all that rare, or just mis/undiagnosed so frequently that it appears to be a rare disease.

Best,

Jennifer