Just heard there's an article in this month's Woman's World magazine about Moyamoya?  Anyone seen it yet?

DJ

i will run out and get the magazine -- let you know later tonight.  I will also check out the net

Janice

Hi guys, I'm new in SC.  

Just read DJ's post about Women's world article.  Went to store to check it out.  It's not in the old issue, and we won't get the new one here until  Thursday.  Thanks for the info, though.  I'll look for it later this week.  

DJ,
   It was good to talk to you today, I am so glad i saw that article. I scanned it as soon as I got home and sent you a copy of it, you might have to enlarge to read. Anyone who would like a copy email me and I will send you a copy. Dj thanks for talking with me today and for your answers to all my questions.

dreamerdi5@aol.com

thanks
diane
(babyblues mom)

I thought this was a terrible article!!!  First of all the doctor tells the mother of the little girl afflicted with MM "your daughter has a rare type of aneurysm called moyamoya".    That's not exactly correct because, according to the article anyway, she didn't actually have an aneurysm. They make no mention of clipping the aneurysm if she did.   Moya Moya can cause aneurysms and strokes but it isn't the aneurysm.   The doctor said they found a "mass" on the girl's brain- what's that?   Secondly, it will scare the crap out of people that have been diagnosed with Moya Moya and facing surgery (in this case she had pial synangiosis).  They start off by saying the little girl's  "only hope- a groundbreaking new procedure- could also kill her...." And then goes on to say that the surgery "is risky:  Kennedy could suffer a brain hemorrhage or major stroke during surgery, resulting in paralysis.... or even death.  Even if Kennedy survived, there's no guarantee the surgery will work."    

It says nothing about what Moya Moya is, they don't even call it by the right name really.  I guess this article is better than nothing written about experiences with MM but I am really disappointed!   Frankly, if I were just diagnosed with MM this would be the last article I would want to read about it.  [smiley=twocents.gif]

P.S.  I don't put much stock in this magazine anyway.  In another article it says that alcoholic beverages and shopping reduce your risk of breast cancer.  I'm rushing off to Nordstroms now with my martini!   ;)

Lisa

Lisa,
      I have to say I do agree with you about the article. My interest when I found it and after reading it was the fact so many things were as you said. I  am working on emails to womans world mag, and several other mag's and talk shows, One way or another I want to work to get the word out on what moyamoya really is and all that it entails. Feeling lost the last 9 months as what to do for my daughter has been a nightmare. I am so thankful for DJ and his site, or we would still be in the dark. I am gonna pull any strings I have and use what resources I can find to get this out and the real information on it. Just wanted to say hi and agree with what you said.

take care
diane
(babyblues mom)

Lisa and Diane -

I was pretty shocked to read this article.  I think Valerie and Kennedy were misled as to the information about this disease.  I've already e-mailed Woman's World magazine (DearWW@aol.com) and I'm hoping everyone who had read this article will as well.  I copied DJ on it too, because I gave them this website in the e-mail.  If anyone wants to read it let me know and I'll forward it to you.

-Shari

Hi Diane,

First off, let me tell you how absolutely thrilled I am that your daughter is going to be under the watch of the brillant Dr. Steinberg!  No worries now!

As for writing to magazines, TV shows etc. that is a wonderful idea and one I've thought of often but I just don't have the time for right now.  I was just reading a Reader's Digest and thinking that would be a great mag for this.  They often have a medical story of some kind.  Maybe it's already on your list.   The more I was thinking about that Woman's World article the more I thought that it would have been better to have nothing written about Moya Moya than the misinformation they wrote.  When I was first diagnosed there was nothing good written about the disease- just gloom and doom- and I really thought I would die from this.  Then I met DJ [smiley=hug.gif] through his clusterheadaches board.  I don't know what I would have done without him and now there is this board where you can get real survival stories.  

Keep up the good work Di!
Lisa

Hi all!

I was able to pick up a copy of the magazine yesterday.  I can see where you're coming from about the medical reference imperfections in the article, but I definately don't agree that it would have been better not to have anything written about moyamoya!

If the article were written in a medical journal or something a little bit more "official", you might have a valid point, but it's not.

Fact is, 99.99999% of the people who run across the article will think it's an incredible story and will have no clue that some of the technical references were made more "dramatic" in order to try and help sell magazines.  

I think it's absolutely wonderful that the word "moyamoya" has made it into a national magazine article!  I'm sure the word, in itself, will stick in people's minds more than the "technical" imperfections that all of us who suffer have sinced researched and found to be incorrect.  Most people can relate to the words 'aneurysm' and 'mass'.  They can't relate to 'moyamoya' or 'puff of smoke'.

I've also spoken to the woman, Elizabeth Holzemer, who wrote and submitted the article to Woman's World.  She wanted to assure everyone here that she throughly researched Moyamoya and wrote the 'correct medical information' into the article, however, editor's opted for the "more dramitic" wording.  Remember, for the editor's, it's all about selling magazines!

On a personal note, Elizabeth has been through A LOT herself and has done some AWESOME work for a group of her own!  She has created an online family for herself and other mother's who've had meningiomas.  I encourage you to stop by and read about HER FAMILY at http://www.meningiomamommas.org/history.asp

She, and her online family have also had to deal with a lot of the same things us mm'ers have had to work through when you hear the words "brain surgery".

DJ