HWN Suggests

"Maui Maui? What the hell is that!!??"

Those were my exact words when I first heard of MoyaMoya in June 2001. I spent the next two months searching the internet for everything I could find on MoyaMoya Disease. My name is DJ and I've been "blessed" with MoyaMoya. If you're here, it's probably because you're like me and came to the internet to find out more about this rare disorder. If you're like me, you also didn't have much success looking through the search engines. There's not a huge amount of information out there huh?

Probably the worst part about being diagnosed with a rare disease is thinking you are the only one in the world who is dealing with the problems associated with the disease. I hope to change all that!

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Featured

 Out of Nowhere, a Devastating Tangle in the Brain

The disorder, called moyamoya disease, is so uncommon that her family doctor admitted he had never heard of it. The name is Japanese for puff of smoke, which is what the disease looks like on X-rays: a wispy cloud of fragile blood vessels that develop in the brain where normal vessels are blocked. It was first identified in Japan in 1959.

 What is Moyamoya Disease?

Moyamoya is an extremely rare disorder in most parts of the world except in Japan. The pathogenesis of Moyamoya disease is unknown. Moyamoya disease is characterized by progressive intracranial vascular stenoses of the circle of Willis, resulting in successive ischemic events.

Articles of Interest

A new approach to studying Moyamoya syndrome

Regardless of whether someone has Moyamoya syndrome or disease, many patients eventually require a bypass surgery that involves creating a window in the skull, typically around the patient’s temple.

It Will Never Go Away

I have been diagnosed with a variety of things in my life, but none have affected me in the same way as the moyamoya diagnosis.

Moyamoya Disease - My story

In early April 2004, I started to experience numbness, clumsiness and slurring of speech on several occasions. I also had difficulty articulating my thoughts as words that came out from my mouth differed from what I had in my mind. These were usually resolved after several minutes and because of how transient the incidents were, I was hesitant to seek help. Still, I knew in my heart that something was wrong but I did not have the courage to face it.

Moyamoya disease and Moymoya syndrome

Moyamoya is Japanese for “hazy, like a puff of cigarette smoke.” Moyamoya vasculopathy is a chronic cerebrovascular disease involving bilateral stenosis or occlusions of the internal carotid arteries and their proximal branches. Cerebral angiography reveals a classic smoky appearance due to the development of prominent arterial collateral circulation. Patients without known associated risk factors have Moyamoya disease, whereas patients with known associated conditions – including Sickle Cell Disease, Neurofibromatosis Type 1, and Down’s syndrome – have Moyamoya syndrome. Moyamoya is more common in Asia but has been observed in populations throughout the world. Medical treatment includes the use of an antiplatelet agents.

Moyamoya disease and syndrome: Knowing the difference can prevent a stroke

The first signs of moyamoya disease usually appear as either a stroke or as recurrent transient ischemic attacks (TIAs)...

Moyamoya disease emerging as an immune-related angiopathy

Moyamoya disease (MMD) is a rare cerebrovascular disorder with unknown etiology. MMD is characterized by progressive narrowing of arteries of the brain and the formation of a compensatory network of fragile vessels. Genetic studies have identified RNF213, also known as mysterin,

Moyamoya Disease: A Review of Current Literature

Moyamoya disease (MMD) is an infrequent disease of cerebral vasculature characterized by long-standing and progressive occlusion of large intracranial arteries. It is seen predominantly in the East Asian population. Most of the cases of MMD are sporadic, but there is a small percentage that is familial.

Moyamoya Syndrome: A Window of Moyamoya Disease

Moyamoya-like vasculopathy develops in association with various systemic diseases and conditions, which is termed moyamoya syndrome. Relatively common diseases and conditions are related to moyamoya syndrome, including neurofibromatosis type 1, Down syndrome, thyroid disease, and cranial irradiation.

Moyamoya Syndrome: What’s the Difference?

I have moyamoya syndrome. So what’s different about it compared to moyamoya disease? Well, they are both the disease, but one is bilateral and the other is not. Or if it is bilateral it is not the primary condition. It can be a case that is similar to moyamoya disease but doesn’t have the exact same progression. This is me.

Moyamoya: An Update and Review

MMD is an intrinsic primary disease process that causes bilateral progressive stenosis of the anterior intracranial circulation with the involvement of the proximal portions of the intracranial internal carotid artery (ICA) extending to involve the proximal portions of the anterior cerebral artery (ACA) and middle cerebral artery (MCA); posterior circulation involvement is very rare.

Moyamoya: Mollie's Story

“I looked up moyamoya, and it was scary,” says Mollie. “I could see that the surgery was highly specialized and isn’t one that’s done with the frequency or expertise I wanted.”

“Faces of Moyamoya” e-Book Released

A new patient e-book resource, titled Faces of Moyamoya, was recently released. It contains information about moyamoya disease, what to expect, and treatment options. It is chock-full of stories from moyamoya patients who share how this disease has changed their lives.

Resources

Moyamoya Foundation

Our focus is on moyamoya disease which is a progressive cerebrovascular disorder caused by blocked or narrowed arteries at the base of the brain.

Moyamoya.com

Internet support for those diagnosed with Moyamoya Disease.

Faces of Moyamoya Disease

A resource for Moyamoya patients and their families that shares the personal experiences of Moyamoya patients. This motivational book helps those diagnosed with this rare disease recognize that there is hope and that they are not alone.

Moyamoya Mom

My recent moyamoya disease diagnosis has set me on a path to raise awareness of this rare brain disorder.

Stuff That Works

We're here to figure out which moyamoya disease treatments work best, together. Help out by sharing your experience.

American Heart Association

Symptoms of Moyamoya disease include acute strokes, transient ischemic attacks (TIA), blurred vision, and weakness of one side of the body. Some researchers believe that Moyamoya disease is the result of inherited genetic disorders because individuals with Moyamoya often have close relatives who are also affected.

NINDS

In children, the first symptom of moyamoya disease is often stroke or recurrent transient ischemic attacks (TIAs), also known as “mini-strokes," that are frequently accompanied by muscular weakness or paralysis affecting one side of the body. Adults may also experience these symptoms that arise from blocked arteries, but more often experience a hemorrhagic stroke due to bleeding into the brain.

NORD

Moyamoya disease is a progressive disorder that affects the blood vessels in the brain (cerebrovascular). It is characterized by the narrowing (stenosis) and/or closing (occlusion) of the carotid artery inside the skull, a major artery that delivers blood to the brain. At the same time, tiny blood vessels at the base of the brain open up in an apparent attempt to supply blood to the brain distal to the blockage. These tiny vessels are the “moyamoya” vessels for which the disease was named.

Practical Neurology

Although moyamoya disease was first described in 1957 by Takeuchi and Shimizu3 as “hypoplasia of the bilateral internal carotid artery”, the term moyamoya (a Japanese word that means puff of smoke) was coined 12 years later (1969) by Suzuki and Takaku.

StatPearls

Moyamoya disease (MMD) is an isolated chronic, usually bilateral, vasculopathy of undetermined etiology characterized by progressive narrowing of the terminal intracranial portion of the internal carotid artery and circle of Willis. Moyamoya syndrome (MMS) corresponds to the same moyamoya phenomenon but occurring in the background of either neurological or extra-neurological conditions, either inherited or acquired.