Today, I wanted to talk about the obstacles that Moyamoya has thrown into my life. Before I start, I recognize that my experience has not been the same as many others with the disease; I was extremely lucky to be able to have two successful surgeries and show signs of drastic improvement afterwards. However, I want to share the impact that the progressive cerebrovascular disease has on my life.

Having Moyamoya has always set me apart from the other children in my school. The disease does not nearly have the awareness that it deserves, which meant that most of my classmates did not even know that it existed. When recalling my month-long absence from school in 2nd grade to go to Stanford for surgeries, former-classmates often put it simply: “Oh yeah, you were sick that year.” There was no mention of the name Moyamoya, but just the fact that I was missing.

The lack of knowledge about my disease erased the potential empathy and comfort that could be provided through shared experiences. In school, there was no source of companionship and Moyamoya community for me. Even after finding various Moyamoya Facebook groups, I felt alone. None of my family or friends have Moyamoya, and I have to search in other parts of the country to find similar stories to mine.

One aspect of life where having Moyamoya alienates me from my peers is sports. There are certain physical limits that inherently come with the disease, many of which have affected my sports life. Every year before school starts, kids must sign up for sports throughout the year. For the majority of my grade, there was a variety of different options for every season. For me, football, soccer, wrestling, and lacrosse were out of the question.

In addition, every time I play on a sports team, the coach is notified of my condition. Hearing a foreign-sounding disease sure can be intimidating, and a coach can often misunderstand that I am also an active, happy boy — minus the need for hydration and lack of head trauma. Sometimes when a group of people (including me) are all working hard or are perhaps doing conditioning work, I am singled out as able to take breaks or drink water when all others cannot. This makes me feel rather uncomfortable, and the feeling of getting extra treatment or special care has never really settled well with me.

For me, hyperventilating leads to a stroke (or a Transient Ischemic Attack). Crying, playing a wind/brass instrument, blowing up balloons, and even yoga/meditation are dangerous for me as they can lead to hyperventilation and therefore a stroke.

Hydration is key with Moyamoya. I encourage you all to check out my friend Alice’s blog allformoya.wordpress.com for amazing tips for staying hydrated. Throughout school, I have had teachers who were super concerned that I was hydrated. I myself try my best to carry around a water bottle during school and drink whenever I can. But the attention given to me by my teachers made me feel uncomfortable, especially because it did not have anything to do with academics.

The different limits that come with having Moyamoya can be frustrating at times. They can make me feel uncomfortable, or alienate me from my friends and peers. However, this blog is my outlet to share my experiences, and is a far better medium than through awkward small talk with a stranger. I love to talk about Moyamoya with all of you readers, and if you feel the same or want me to talk about anything at all on this blog contact me at:

reddylee01@gmail.com

Thanks!

 

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