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Unfortunately, I learned that Moyamoya means “puff of smoke” in Japanese because the blood vessels in my brain looked like this during an angiogram.
After my diagnosis, I learned that there is no cure for Moyamoya disease but that the recommended treatment is surgery. Last June, I underwent two brain surgeries (a week apart) to augment the blood flow in my brain. Fortunately, despite some speech difficulty, pain and much anxiety, I had successful surgeries.
I owe so much to my fellow Moyamoya warriors who supported me virtually (and in person) to get through my ordeal. Since my surgeries, I have become a vocal advocate for raising awareness of Moyamoya disease.
While not quite official, Moyamoya patients have started a movement to declare May 6th as World Moyamoya Day! I am proudly taking part in the day this year and asking all of you to take a minute to educate yourself.
According to the Stanford Moyamoya center, Moyamoya is a disease in which arteries in the base of the brain are constricted, restricting blood flow. Fragile blood vessels proliferate around the blocked artery in an attempt to bypass the blockage.
Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage (bleeding within the brain).
I consistently focused on this fact leading up to my decision to undergo surgeries. Despite it being a terribly difficult decision. I know I had to have surgeries!
Fortunately, I had the support of family and friends that allowed me to travel across the country for almost a month to have my surgeries with the most experienced, best adult neurosurgeon in the country.
Thank you again, #TeamLisa and Dr. Steinberg!
Knowing what was to come with a progressive disease, I was anxious to have the surgery and pleased that all went as expected. It was certainly a challenging, scary, anxiety-ridden, painful time but now just 11 months later, I am well.
Today, I join with other Moyamoya warriors to raise awareness and count our blessings. I’m so fortunate to have been connected to the most supportive group of patients I have ever met. Since there are so few of us in the United States (Less than one in 100,000), it was so comforting to have people to speak with before, during and after the surgeries.
Making the correct diagnosis seems like the most problematic part of Moyamoya Disease. If a patient suffers too many strokes, surgery may not be an option. Raising awareness of this disease and educating patients, EMS, hospital staff and doctors of this disease will ultimately lead to more correct diagnosis and better treatment. Help us help others!
To honor the day and create awareness of #Moyamoya, I ask you to change your profile photo on social media to this and hashtag #WorldMoyamoyaDay:
Today, I will spend some time reflecting on my good fortune to be on this side of surgery. I am thankful that someone was able to diagnose me correctly with this disease. I am lucky my surgeries went well. I am fortunate to be feeling strong and finally emotionally stable. I am blessed to have a community of other Moyamoya warriors.
Pease join me in recognizing World Moyamoya Day!