Wedged in between Mowat-Wilson and Moynahan alopecia on the National Institute of Health’s “Rare Disease List”, Moyamoya disease sits as one of the 7,000+ conditions that affect less than 200,000 people in the United States.
Living with a rare disease, one that almost no one — other than doctors, family members and close friends of those who have Moyamoya — I have met has recognized or heard of, can be difficult. Even as I type this post, the term “Moyamoya” is not recognized as a word and has irritating red dots underlining it.
When explaining Moyamoya, I often give an oversimplified version of a complicated cerebrovascular disorder while also explaining how that corresponds to the scars on both sides of my head. I do not even know very much about this disease — other than what I have sought out to learn — and hardly have the expertise to give a concise and accurate description to someone just finding out about it.
I have encountered countless situations where I have been going about my day, when I get a gaze at my scars. That usually leads into a conversation, where “These are scars from when I had brain surgery in the Second grade” is met with surprise. Several people who have asked about my scars — which I do not condemn as an rude or insensitive action — have even thought that I was sporting a strange hairstyle.
Sometimes, people think that I am joking, or pranking them — I assume due to the rarity of Moyamoya combined the rarity of a Second grader going through brain surgery. These moments of doubt are clearly well-intentioned, yet are vaguely annoying. Although there is really no way for anyone other than an expert in cerebrovascular diseases to recognize Moyamoya disease in my scars, it is unlikely someone would lie about such a life-changing and terrifying part of their life.
The real source of my frustration lies in the lack of awareness of Moyamoya. Research, as well as my own experience, indicates that cases of Moyamoya are actually far more plentiful than shown by statistics. Even in cases — such as mine — with “textbook” symptoms of Moyamoya, they are often overlooked and more common, easily treated diseases are diagnosed. Especially in areas with meager medical resources, a rare disease such as Moyamoya is not likely to be seen or properly diagnosed. Several accomplished doctors in the NYC area completely misdiagnosed me, and one almost gave me steroids to treat something that was not there.
Minor strokes, or TIA’s are one of the principle symptoms of Moyamoya. Yet, one who experiences TIA’s is unlikely to ask for an MRI or an angiogram — surefire ways to confirm a case of Moyamoya. The chances that someone who has a developing case of Moyamoya reaches out to a doctor before a seriously debilitating stroke and is successfully diagnosed is slim.
Nowadays, with expanding and improving Moyamoya treatment centers, breakthrough research, and highly successful operations the issue lies in awareness. If no one knows about the disease, what use is a top-notch clinic at Stanford or Boston going to be?
This is one of the reasons that I created this blog in the first place. I was one of the lucky survivors who was diagnosed in time before a serious stroke. I feel as though it is my responsibility to attempt to prevent a tragic case of somebody suffering a paralyzing or deadly stroke simply because nobody around them knew about Moyamoya. Moyamoya is a deadly, progressive disease; it gets worse and worse over time without proper treatment, with strokes escalating in damage until death.
Although awareness is one of the key components of preventing unnecessary loss at the hands of Moyamoya disease, research for a permanent cure — something that does not currently exist — is crucial.
There is a Moyamoya research fund at Stanford University Medical School dedicated to finding a cure. I will post a link to donate at the top right of my blog next to “Contact” and “About”.