To many people, the name “moyamoya” may conjure images of a tropical island or an exotic fruit, but to those who know the real meaning of the word, “moyamoya” is synonymous with death.
According to a moyamoya pamphlet issued by the Stanford University Medical Center, moyamoya is a neurovascular disease that gradually inhibits blood flow to the brain. Moyamoya is widely unknown in the medical profession, and very little is known about the disease itself. Tara MacInnes, a graduate student pursuing a master’s in counseling at Southeastern, is a moyamoya survivor who is determined to spread awareness of this disease to medical professionals.
“I was diagnosed with migraines when I was five years old,” said MacInnes. “It wasn’t seen as a need for me to have neurological testing until I was sixteen years old, after I’d been symptomatic for eleven years. During the first half of my junior year of high school I had the MRI of my brain, and lo and behold, I’d already had two strokes.”
Because of the rarity of the disease and the general lack of knowledge among medical professionals, many who suffer from moyamoya disease are likewise diagnosed long after symptoms occur. When not treated promptly, moyamoya can have devastating, sometimes fatal, consequences for the patient.
“What happens with the disease is the carotid arteries, which is the main blood supply going from your heart to your brain, progressively start to narrow at the base of the brain,” said MacInnes. “Unfortunately, with the disease, when the arteries begin to narrow, they don’t stop narrowing until they’re entirely closed, so the brain is constantly being deprived of its blood supply, which is its oxygen supply.”
Doctors are unsure of what causes the narrowing of the internal carotid arteries. However, there is treatment for moyamoya patients. When treating moyamoya patients, doctors perform surgery that is meant to increase blood flow and prevent further symptoms, which can include migraines, strokes, TIAs (transient ischemic attacks) and cognitive impairment, according to Stanford University Medical Center.
Statistically, 1 in 2 million people are diagnosed with moyamoya disease, but research shows that, because those with moyamoya disease are often misdiagnosed, the number of those with moyamoya disease could be significantly higher.
“Based on their [Stanford’s] research, they believe that the actual worldwide statistics are closer to 1 in every 200,000 people as opposed 1 in every 2 million,” said MacInnes.
According to MacInnes, the name moyamoya was coined by Japanese medical doctors who first discovered the disease. Moyamoya comes from the Japanese phrase for “a puff of smoke,” because it looks like a puff of smoke on diagnostic tests. The only known way that moyamoya can be properly diagnosed is through cerebral angiograms.
Since her diagnosis, MacInnes is attempting to spread awareness so that fewer moyamoya patients will suffer due to misdiagnosis.
“I pretty much raise awareness in everything that I do,” said MacInnes. “I swam from Alcatraz Island in San Francisco Bay back to San Francisco in 2008 as a way to raise awareness for moyamoya disease. A couple of months after that, also in 2008, I swam from the south end of the Golden Gate Bridge to the north end of the Golden Gate Bridge.”
MacInnes has also gone skydiving, rock climbing and other such ventures in the name of moyamoya awareness, hoping that the more medical professionals are aware of the disease, the more lives will be saved.
For more information on moyamoya disease, go to www.stanfordhospital.org/.