Hi Michelle,

I’ve read over the stroke association website before. It’s a division of the heart association, so nothing about moyamoya that I’m aware of at all, anywhere. Although it has every link you can imagine, from diet to menopause, but no link to moyamoya as a cause for stroke. (At least not in the past when I looked.) That’s exactly what annoys me about the medical profession; they fluff it off to being rare, so why mention it, but if they're not aware of moyamoya as being a deadly risk for stroke, who would??

I couldn’t agree with you more that we need awareness… but it’s the stroke association for crying out loud, and no mention of moyamoya??? Duh!!! With any half decent research; you’d think it would at least have a link to moyamoya disease somewhere.

What can we do about it?? Good question! I often wonder if they’d take a layperson’s word seriously, or do they need some medical experts to get the word out about moyamoya, ya know what I mean?

Don’t get me started, or my language will take me to the back room…lol

Mar

Hi Michelle,

I went to the American Stroke web site and found under the contact icon a place to "tell your story"  anyone who has moyamoya should go there and tell their story.  I would think that would get some attention.  Also, there is a general questions section under the contact icon. I asked why moyamoya is not mentioned on their web site.  We will see if they respond.

Tell Shane Hi and we'll talk soon.

Hugs,

Lore

Well, I submitted Daphne's story to the Stoke Association website (in the "Tell Your Story" page).  Here's what I posted:

My 20 month old daughter, Daphne Moyer, suffered two strokes this January.

Daphne was born with a congenital heart defect, called Coarctation of the Aorta.  She also developed a seizure disorder (Infantile Spasms) at three months old, and experienced developmental regression.  After many studies, her doctors could not find any cause for the seizures, nor could they make any pathological connection between her heart defect and her seizure disorder.

However, this January - two weeks after she underwent surgery to repair her heart - Daphne suffered a stroke that paralyzed her left arm and leg.  A few days later, she suffered a second stroke that affected the right side of her body.  She was diagnosed with a disorder called Moyamoya disease, which meant that several of the main arteries that deliver blood to Daphne’s brain are occluded, and that a network of tiny blood vessels had formed as the body's effort to redirect needed blood (see http://cpmcnet.columbia.edu/dept/nsg/PNS/moyamoya.html for more information on Moyamoya disease).

After her second stroke, Daphne was expected to die, and we requested to go home under hospice care.   However, Daphne made an amazing recovery at home, regaining the ability to breathe easily, suck a pacifier, move her legs and move her left arm.

She underwent surgery this March in Stanford, CA to redirect blood flow to her brain, and prevent future strokes.  She continues to make improvements at home, and has proven that she is a true fighter.  You can read more about Daphne on her website, www.daphnestory.com.

We have since learned that Coarctation of the Aorta can be associated with Moyamoya disease, and that in pediatric strokes following cardiac surgery to repair congenital heart defects, Moyamoya should always be considered  (see http://pediatrics.aappublications.org/cgi/content/full/101/1/57) 

If Moyamoya disease were more widely known about, Daphne’s strokes might have been preventable.   I hope you will consider placing some reference to Moyamoya disease on your website.

Thanks!