Birthdays

Several days ago, as I was scrolling through Facebook, I noticed something unusual: A notification stating that it was FIVE of my friends’ birthday. Given the number of Facebook friends I have to begin with, this notification was odd. Statistically speaking, only around 1.5 of my Facebook friends should have a birthday every day. Regardless, my thoughts naturally drifted to my birthday. Although it is quite far on the horizon, I could not help but remember the fun times I have had in the past. One of my favorite things to do is take my friends out to a Korean BBQ restaurant. It is almost always a crowd favorite, and, in my opinion, the best type of food out there.

Whether the activities include an authentic Korean food experience or a Super Bowl viewing party, one birthday tradition stays the same. Rather than asking for presents or gifts, I ask my friends/family to donate money to the Moyamoya research fund at Stanford (there is a link on the top right corner of the website). It seems cliché as I am writing this, but I truly appreciate any donation to the research fund more than a material gift. Any aid to the research for a cure to Moyamoya cannot be quantified in its value the way an IPhone or Xbox can. As someone who was lucky enough to be thriving over ten years after my diagnosis, I feel as though it is my duty to ensure no one has to go through the experience that I or any other Moyamoya patient did. It is a terrifying experience especially due to its rare nature; there are probably millions of people living with the disease without even knowing it.

One day a cure will be discovered — this I am certain of. However, the reality is that no progress will be achieved without financial support. I pray that the day that we find a 100% effective, surgery-free, affordable cure for Moyamoya happens while I am still alive, and I will do anything in my power to ensure that this goal is fulfilled. The impact of a realized cure for Moyamoya is intangible and has the potential to affect billions in the long run. This is why I truthfully do not harbor any doubts or regrets in my decision to ask those willing to donate to the research fund rather than give me a material gift. When asked if I “miss getting gifts” for my birthday, I respond by explaining that a donation is not only a gift, but for more than just me. Fortunately, I was diagnosed and operated on just in time, and have been doing well since. The gift is for those who are currently struggling — whether they know it or not — with Moyamoya, It is for those who have not even been born yet but will enter the world with a life-threatening progressive cerebrovascular disease.

There are certainly other aspects key in the fight against Moyamoya, such as raising awareness. However, they are all related. Raising awareness can lead to an increased effort to garner financial support for cure-related research. More money funneled into all different aspects of Moyamoya prevention/cure can be crucial in spreading awareness. They go hand in hand, and are equally important in addressing. I will maintain my annual tradition again February 2018, and keep in mind those who will be impacted.

 

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Reflections on a Mission Trip

Here are some photos from my trip; read more to find out the context behind them.

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A few weeks ago I embarked with my church on a mission trip to Corozal, Belize. Our task was two-fold: help rebuild the home of the pastor of the local church and run a small VBS for the local children in the community.

Our trip to Belize began at 3:00 AM, as our flight was early and it was a long drive to the airport. Heading into the experience, I was nervous and did not know what to expect. This would be the first service trip ever for me, as most of my other traveling was for leisure. A combination of what I have heard from friends and seen on social media left me with the impression that there would be plenty of Instagram photo-ops and little connection with the locals. A friend of mine had gone on a similar sort of trip a while back and posted a photo of her with a small child with the caption: “I want one”. This is the sort of experience I thought I would have.

We took a connecting flight to Belize, and I slept most of the first leg of the trip. Everybody was relatively tired, and social groups started to form. By the end of the second flight, I was busy filling out the customs sheet we needed to enter the country. I had an aisle seat, and my friend grabbed my shoulder suddenly, interrupting my world of passport numbers and Eminem. She pointed to the window, and I moved as far as the seatbelt let me to see what was going on. The view was breathtaking. Sparkly turquoise waters spread across the template the airplane window allotted, with splotches of darker water and land spread throughout. The closer we got to the airport, the more the landscape changed. The beautiful water gave way to dense bunches of forestland that were parsed by thin, dirt roads and small towns.

When we touched down in Belize and exited the plane, a wall of heat and humidity hit me. I had been wearing thick sweatpants for the trip since airports and planes are usually on the chilly side, but I immediately regretted it. For the same reason, I was also wearing a hoodie and wanted to take it off. But our trip had some guidelines regarding clothing since we did not want to offend anyone and I was wearing a tank top underneath. Even when entering the airport — there were fans set up — I was sweating and ran to the bathroom to change into a t-shirt. We got our bags and met up with the people running the mission trip outside. We only spent ten minutes waiting for the bus to meet us but beads of sweat were dripping down my neck. When a white-painted school bus met us, we piled in and quickly found out that it felt like an oven.

As soon as the bus started moving, a breeze hit us through the windows — all of which were opened or discovered broken. The bus ride was long, roughly 2 hours, but mercifully it was interrupted by a stop at a restaurant by the side of the road. The small patch of land where the restaurant was located also housed several shacks, with children playing with what seemed like a soccer ball and adults sitting down watching them. This stop was also where we saw our first few dogs, many of which would come later. The meal was surprisingly good, and gathered quite a few grunts of contentment. Everybody was fixated on the sodas, all of which were made with real cane sugar.

After exiting the restaurant, full and happy, we embarked on the latter leg of the ride to our hotel. The location of our hotel was right on the edge of the bay, overlooking the greenish water and cities in the distance. We rushed — leaders and students alike — to find out where we would be spending seven mornings and nights. Perhaps the most satisfying material discovery on trip (besides the food — but more on that later) was that our rooms had AC and a fan. I did not care about the small, musty smelling bathroom or the oddly bumpy beds and pillows, but absorbed the much missed AC during the nights. Of course, we became spoiled every time we left the rooms, hit hard with the heat and humidity, but entering the rooms and turning on the AC after a long, sweaty day of work elicited an indescribable feeling.

The next day, we went to the church we would be working with for a morning worship service. It was located in a small town, comprised of lots of dogs, dirt roads, and run down houses. The service was mostly in English, yet the pastor only spoke Spanish, leaving the majority of our group with confused faces. After the morning service, we walked around the town in groups — literally going door to door — asking people if they would like to send their children to the VBS we were running at the church. Along the way, I got to see what life was like up close. Children would run around, either helping their parents with chores or relaxing under a tree eating fruit. There was lots of fruit everywhere, mainly growing on plentiful trees across the town. One of the children that we were walking with offered us some fruit which we picked off of the ground, of which I still do not know the name. The culture — from as far as I could observe — was tightly knit and very communal (the opposite of NYC).

After we recruited for our camp, we returned to the church for another worship service. Upon returning back, we were greeted by a group of ladies who served us dinner. They cooked for the church and had made us a delicious meal of chicken, beans and rice. We devoured it with a mixture of gratefulness and contentment.

Later that evening we had a debrief session with the missionaries who were running the operation and learned about the conditions we would work in and the rules we needed to follow. In sum, we learned three things: one, we would need to wear long pants and long socks in 90 degree, 100% humidity conditions; two, bug spray would be our best friend over the course of the next week; and three, we need to drink water and gatorade like there’s no tomorrow. We also found out that there was a nearby grocery store that the hotel had a good relationship with.

Lying in bed that night, a thousand thoughts raced through my head. I was not sure if I would have the strength to maintain a strong, persistent attitude whilst working in the immense heat and humidity that I’m sure I would face the next day. I also spent a considerable amount of time thinking about how and if I was going to adapt to the conditions of our environment during the following several days.

Alas, morning soon arrived — rather early, at 6:30 — and we all marched down from our rooms to eat breakfast. Somewhat of an American-style breakfast met us, with eggs, sausage, and pancakes, and we chatted about our nights and the day ahead of us. Armed with long pants (cargo pants for me and my brother), heavily lathered bug spray (which smelled terrible), and full water bottles, we boarded the bus and embarked for the first time to the work site.

The work site was located next to the church we had visited the previous night. We got off the bus and were greeted by one of the elders of the church who would take the role of leader on the site for the next several days. The first task at hand was to strip and repaint old screens from the pastor’s home. There were about ten of them, so most of our team focused on that. The remainder of the group started to paint the house. Work continued through the morning until our lunch break. This is where we got our first taste of authentic Belizean food — and it was heavenly. To us, it seemed like the cuisine was Mexican food. With more emphasis on chicken, lime, and other spices, Belizean food quickly became one of my favorite kinds — ranking up there with Korean food in my mind.

After lunch, we continued work till around 2:30. Then we started to welcome the kids into the church to sing some songs and played games. Something that I started to notice right away was that most of the children, even though they were very small and young, were incredibly talented at soccer. Often without shoes on, they could kick hard, control the ball well, and run very fast. Playing and interacting with the children — really getting to know them — was probably one of the more gratifying experience I had on the trip. I found them to be so genuinely happy and lighthearted, excited to have the opportunity to kick around a new soccer ball or do a craft that it energized me and allowed me to give it my all during the VBS even after working for hours before.

Following the end of our VBS session, we would eat dinner — again prepared by the group of women who had cooked for us at lunch and at the previous night’s dinner. The food was fantastic, in part due to our hunger, and we went back to the hotel to rest.

The next few days went in similar fashion, with lunch and dinner serving as well-needed times of restoration and encouragement. They were landmarks in the day; something to look forward to. As the week progressed, the soccer games and piggy back rides started to add up and I really got to know several of the children in the town. Our team eventually moved on to focus more on painting the house rather than the screens, and we became more and more adventurous with our fruit experiences.

One of the tasks I had was to drive out to a different site where all of the missionaries’ gear and tools were. I, along with three other students, a leader, and one of the missionaries reorganized a large storage unit loaded with rusty equipment and water coolers. Because we were working close to noon, the sun beat down on the metal storage unit and made the inside feel like an oven. We also needed to use work gloves in order not to get cut by the rusty tools. This activity took more mental endurance than anything else on the trip, but after completing it — rather efficiently, if I do say so myself — I felt a great sense of relief and pride.

At the end of the week, after working on the house, we had a rest day. This was our day to act more as vacationers or tourists than mission workers — and we fulfilled that role pretty darn well. Not only did we get to snorkel with sharks, but also walked along the beach buying trinkets and great food. It was the perfect day of relaxation that we all deeply needed, but also provided a sobering reminder that we only temporarily immersed ourself in a different environment, and would be returning to our lives of relative wealth and comfort — leaving the community we learned to love behind.

I thought about this on our flight back to NY, and how all of the hours and energy I poured into our work in Corozal is really nothing in the grand scheme of things, and how large the gap was between what I wanted to change and what I could change. However, the journey and growth that I was able to enjoy over that week cannot be understated. The ability to do meaningful work and spend time with a community in need — not to mention the novelty of a trip like that for me — is truly a blessing.

I am grateful to everyone who allowed me to healthily journey down to Belize, regardless of how direct their role. Of course, I am extraordinarily thankful for my parents, the church, and the various donors who enabled me to travel in the first place. But equally important are those who saved my life: the Stanford team, Dr. Steinberg, Dr. Jordan, and my grandfather. In the midst of a busy and hectic trip like Belize, it was easy to forget how lucky I was to be there in the first place.

 

From Patient to Student; A Different Side of Stanford

The last time I was at Stanford, it was for a check-up with Dr. Steinberg to ensure that my operations back in 2008 were working. I remember an angiogram, an MRI, and too many IV’s for my liking. The time before that had been another scheduled check up, and the time before that had been my surgery. Essentially, my only experiences with Stanford thus far have been related to Moyamoya and keeping it at bay. This all changed a few weeks ago.

Back in early February, I was contemplating what I was going to do with my summer. Several of my friends had already secured internships, decided to go back to their camps as CIT’s, or pursue studies at summer programs. One day, while in Chemistry class, I saw my friend filling out an application. My curiosity sparked a conversation, and soon I became aware of one of the summer programs that Stanford offers.

“You better hurry up,” my friend said, “the app is due in a few weeks and there’s a ton to write.” I do not remember ever feeling such a drive to write. Not only did the course I chose interest me, but there was this desire to see the “other side” of Stanford: one of students, classes, dorms, and a campus; not of doctors, nurses, IV’s, and sterile white hallways. My understanding of Stanford — the thoughts that came to mind when the name was mentioned — was different than most going into this summer.

Several months later, I arrived at my dorm, excited and nervous. This was the first time I had been away from my family for over a week. I was there to study International Relations at one of the summer programs for high schoolers. Over the course of the next few weeks, I met intelligent, inspiring people from all across the world, made lifelong friendships, and learned a lot. My first time walking across the campus — I got lost due to my terrible sense of direction — I was awestruck at its size and unique beauty. The red tiled roofs and palm trees, as well as the fountains completed the relaxed yet lively environment. The people I met at Stanford transformed my experience. While one may be able to see all that I did as a tourist or visitor, the professors, graduates, students, and fellow classmates that I interacted with expanded my perspectives on life and taught me more about myself in the process. Sure, I learned tons about the global economy and the ways that countries interact with each other, but I also learned what it meant to be independent, make lasting friendships of my own, and explore a sprawling campus and decide what my place there looked like. In short, I experienced, albeit for a brief time, what it felt like to be a college student.

Moyamoya Day Reflections

Note: Earlier this month, California officially recognized May 6th as Moyamoya Disease Awareness Day (http://scopeblog.stanford.edu/2017/05/04/may-6-officially-recognized-as-moyamoya-disease-awareness-day-in-california/)

This past Saturday was World Moyamoya Day — but only to those within the tight-knit Moyamoya community and their friends/family. There has been an effort to get the World Health Organization (WHO) to recognize May 6th as “World Moyamoya Day”, yet the WHO’s decision that the disease is not “major” enough to receive recognition in this form presents a roadblock. Because of this, there is a petition, one spearheaded by Tara Macinnes, to persuade the WHO (World Health Organization) to formally set May 6th as “World Moyamoya Day”. The link to the petition is under the “Important Links/Other Sites” page of this website, but I have copied it below as well:

http://www.thepetitionsite.com/831/455/587/moyamoya-disease-awareness-world-moyamoya-day-may-6th/

Getting as many signatures as possible — telling friends, family, or peers about this petition — is absolutely crucial to the spread of awareness of Moyamoya. There are around 5,000 signatures needed for the petition to be legitimized. I write often about the need for increased awareness about Moyamoya, yet do not regularly explain why it is so necessary. I was misdiagnosed almost a dozen  times by otherwise qualified doctors and neurologists before being succesfully treated simply because of the “rarity” of Moyamoya cases; however, a trained or aware doctor could have observed and picked up on the rather textbook signs of Moyamoya that I exhibited in MRI’s. The issue is not necessarily  with the doctors themselves — who are representative of the general medical community and was as the public’s knowledge of Moyamoya — but with the fact that almost nobody a) expects to see cases of Moyamoya or even b) knows what it is. Fortunately, I was able to be seen by one of the leading experts in Moyamoya, Dr. Lori Jordan (see my interview with her a few blogs down) and was properly diagnosed.

However, the sad reality is that not everyone has been/will be as fortunate as I was; The correct diagnosis of Moyamoya disease is not difficult to make when a doctor is informed and aware; with proper resources such as an MRI or an angiogram, the signs of Moyamoya in the brain’s blood vessels can be easily distinguishable.

All current statistics indicate that close to 1 in every 2,000,000 people in the world have Moyamoya — hence its status as a “rare disease”. However, factors such as misdiagnoses have led researchers at the Stanford Moyamoya Center to estimate that the actual number is closer to 1 in 200,000. The  astounding difference in the two estimates of Moyamoya cases per population concentration is incredibly worrying, especially given the progressive nature of Moyamoya. The longer the disease  goes untreated, the more one is vulnerable to repeated strokes which could lead to increasing cognitive and physical damage  or death.

This is why raising awareness for Moyamoya is so important; this is why we need to convince the WHO to recognize May 6th as World Moyamoya Day. It is tragic how an unknown number of people die every year because of stroke or hemorrhage due to an undiagnosed or belatedly diagnosed case of Moyamoya.

Another reason that signing this petition — taking 5 minutes of your day (maximum) in order to further a life-saving cause — is necessary is the funding for research. Just as a WHO-recognized awareness day would raise awareness for the disease, it will attract attention towards the research being done at leading clinics around the world. There is currently no cure or prevention method for Moyamoya, and there only exist surgeries to aid in improving cerebral vascularization. The problem is, however, the lack of access that many people have to get the MRI’s and angiograms, not to mention surgeries, in order to beat back Moyamoya. Drawing more attention to the severity and relevance of Moyamoya disease everywhere around the globe could potentially fuel research to find a cure.

 

Baseball and Gratefulness

One of my favorite things to do is play baseball. I have done so for years, and am part of my high school’s baseball team. I love the community, excitement, and competitiveness that the sport provides, and hope to continue to play for as long as possible. Although I am not a freak athlete or a stand-out prodigy, I still value its role in my life and continue to play.

Baseball is only one of the activities that I enjoy and am fortunate enough to pursue. I run Cross Country, teach and play chess, play guitar, participate in Model Congress conferences, and more. Nearly none of my growth and experience in any of those fields would be possible without my successful surgeries. I would not be able to do much of what I now love if I continued life undiagnosed and untreated like many out there. The minor strokes that I had would have gotten worse and more frequent the longer I went without treatment, and that is unfortunately a reality for many of those with Moyamoya. The rarity and lack of awareness around Moyamoya is ultimately the deadliest factor, and one that led to several of my misdiagnosis.

Earlier this week, during one of the first games of our school’s baseball season, I dove to catch a fly ball. After making the play, I felt a rush of gratitude. I tend to take my health for granted, and not think about the very real possibility that I could have suffered a major, paralyzing stroke before I was successfully treated — or even that my operations almost a decade ago did not produce the optimal results they so far have. It is too easy to get lost in comparisons to my peers on the team, or players on the opposing team. This leads to a disregard for how far I have come since my first TIA at the age of 5.

The attempt to more consistently recognize how privileged I am to have been diagnosed and treated before any serious, lasting damage — physical and mental — has led to a more humble attitude as well. Rather than accrediting any achievement solely to myself and getting self-absorbed, I instead think about all of the kind nurses at Stanford, Dr. Steinberg and his skills/expertise, my parents, and all of my friends and family that supported me through a time of need — all of whom contributed in their own ways. It is important to keep in mind that it is a blessing to be healthy, especially if you have a disease such as Moyamoya that does not have a definitive cure and lacks awareness.

 

Dehydration and Everyday Life

As someone with Moyamoya disease, staying hydrated is especially crucial to my health. However, as a relatively active and busy teenager, it can become easy to forget to drink water and stay hydrated. Usually I try to carry around a water bottle during school, as it provides a physical reminder to drink. In engaging and stimulating settings such as school, social situations, or sports, getting carried away and neglecting to stay hydrated can be easy — bringing a water bottle with me makes keeping hydrated easy and simple. I often find myself in situations where I have been concentrating on one thing for such a long time that when I finally get something to drink, I realize how thirsty I am. For example, during a packed and busy day at school, there can be lots on my mind other than drinking water. Even when eating lunch, I tend to drink less hydrating, sugary drinks such as lemonade when my body needs water.

The irony lies in the accessibility of water around me. Despite the privilege of usually having a source of clean water, I do not often take advantage of it. This is not in an attempt to scorn my body, but rather a lack of habit and a preoccupation with something else. I find that I am often slightly dehydrated when there is a source of water nearby me. In my mind, there is somewhat of a procrastination towards staying hydrated: “I will just get some later.” And this is fueled by how easy it is for me to access drinking water. The availability of water often circumvents my hydration levels, and causes water to be low on my immediate list of priorities on a given day.

Just to clarify, I am almost never dangerously dehydrated. Many of the instances that I have referenced above are cases of mild dehydration, not anything life threatening. However, it is still imperative as someone with Moyamoya to keep hydrated. One easy way for me to tell if I am hydrated is urine color. The darker and more yellow my urine is, the less hydrated I am. That, and thirst levels, are last resorts for me in terms of staying hydrated. For me, it is ideal if I do not have to rely on these signs of dehydration and be proactive in drinking water instead.

Although I am not necessarily the model, hydrated person, I have been striving to stay hydrated recently and want to share some quick, easy tips:

  • As mentioned before, keep a BPA-free water bottle on person throughout the day, and on trips
  • If you notice any of the tell-tale signs of dehydration, (see https://medlineplus.gov/dehydration.html) drink water immediately
  • Stay away from sugary, caffeinated beverages as they are not as hydrating as water
  • Stay away from salty, high-sodium snacks
  • Remember to drink water after exercising, especially when the weather is hot.

 

Haircuts

As someone who has had clearly visible scars on both sides of my head since the 2nd Grade, I know how it feels to be self-conscious. Many times people have asked me about them, often thinking that my scars were a hairstyle preference. Of course, I do not disdain or dislike those who ask me about them, but the questions often make me feel uncomfortable. At some points in my life, I have let my hair grow out in order to have my scars less noticeable; I suppose that I thought it would make things more convenient.

It all probably started when I met my brother and sister at the airport after returning from Stanford. My sister looked at me, — two years old at the time — with a innocently frightened face, and pointed to where my scars would be on her head in confusion. At the time, I just smiled and thought nothing of it. Only weeks after my surgeries, my scars looked absolutely disgusting and intimidating — especially for someone young. Since then, it has seemed like an endless stream of people asking me about my scars. My answer has always been the same: “These are scars from my brain surgery in Second grade.”I usually say this casually, and matter-of-factly, just to try to get over it. Many times, this has the effect of shocking the person, and often prompts them to say something like “I’m sorry to hear about that.”

In the past several years, I have had this pattern occur: First, I would get long, shaggy hair and decide to cut it; then, I would see how visible my scars are and feel hesitant and irrationally insecure. In my head, I would think that everyone would notice and comment on my scars, — which is not a big deal at all — something that I am unreasonably afraid of. Sometimes, I would get a few questions about my scars from people who had not even noticed they existed, but things always go normally.

My insecurity spawns from the natural desire to want to fit in with everyone around you. I have always wanted to be known for my merits, and actions rather than the fact that I have Moyamoya disease. It is an important part of my identity, but not one that I want to define me before my personality. My scars are something that clearly separates me from 99% of those that I have met, and that can make me feel uncomfortable. Although my insecurities certainly still do exist, this past year I have started to care less and less about trying to cover my scars. I have come to accept that they are a part of my life, represent a key experience that I had, and am proud to bear them.

 

Living With A Rare Disease

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”.

MRI’s and Me

From blood tests, to routine vaccines, to IV’s, there has never been a shortage of needles in my life.

When I had my surgeries in Stanford almost 10 years ago, I remember holding both of my arms out straight in fear that the two IV’s on each arm would snap inside me if they bent. At that time, having at least one IV was a regular ordeal, and I simply dealt with it. Back then, I had not really thought too much about them, simply a source of discomfort.

But ever since my surgeries, and the series of various needles following, I have developed somewhat of a fear of needles. Before getting an injection or my blood drawn, I would freak out — internally, of course — and play the scenario over and over again in my head before hand.

Around a month ago, I had an MRI done for a regular post-surgery check-up. I knew beforehand that I would need an IV for contrast, as I had been through the ordeal many times. However, several unpleasant experiences with IV’s still haunted me, and I walked into the prep room nervous.

Seeing the IV itself in the plastic wrap caused an involuntary tremor within me, and a familiar knot began to form in my stomach. As the spot of the injection was swabbed down, after I meekly informed the nurse that I would rather have it in my right arm, I had brief flashbacks from similar situations.

Despite the knowledge that it would not hurt, and the stinging sensation would be gone at within the minute, the psychological block remained. Something about the process, the lack of control, and the childish fear of even the slightest bit of unavoidable pain prevented the transcendency of the mental barrier.

This time, I can luckily say that, in retrospect, the actual MRI was the worst part. The cacophonous variety of sounds pounded in my ears for what felt like an eternity, while in reality lasting 40 minutes. The IV injection went smoothly, and the blast of relief that I felt following the quick procedure felt great. I immediately murmured something along the lines of “That wasn’t that bad”, and vowed to remember that, and internalize it.

Although I have not gotten my irrational, but deeply entrenched fear as of late, the recent MRI gave me a note of hope, that the annoying and gripping panic leading up to a simple injection would one day go away forever.

An Interview With Dr. Lori Jordan

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Dr. Lori Jordan is currently the Assistant Professor of Pediatrics, Director of the Pediatric Stroke Program, and Director of Pediatric Neurology Residency Program at the Vanderbilt University School of Medicine. She used to work at John’s Hopkins, where she diagnosed me with Moyamoya.

Dr. Jordan has been immensely kind to me and my family over the years, carving time out of her busy schedule to meet with me. She has had an immeasurable impact on my life, and I will always remain grateful for her help.

Over the course of the last month, I have been in contact with Dr. Jordan via email, and assembled somewhat of an interview with her. I also met with her in person for a checkup at Vanderbilt several days ago, and was able to ask a few more questions.

I wanted to have this interview to be more informed about Moyamoya, especially because it provided me the opportunity of learning from one of the country’s foremost experts.

Here is the interview:

Me: Regarding simple statistics about Moyamoya, (ex. How many people have it, what is the demographical distribution, what are several definitive leading factors, etc.) where should one look to find accurate and updated information?

Dr. Jordan: Finding up to date information is challenging for rare conditions.  I looked at many websites. Most hospital based websites have not been updated significantly in the last 5 years. NORD, the national organization for rare diseases is a good source.

Three good sources are below:

http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm
http://www.childrenshospital.org/conditions-and-treatments/conditions/moyamoya-disease
https://rarediseases.org/rare-diseases/moyamoya-disease/

I tend to look at many sources and compare them. Probably the most reliable source for medical information is the New England Journal of Medicine. They published a review article on Moyamoya in 2009 written by Dr. Scott and Dr. Smith from the Children’s Hospital of Boston. Though a little older now, this is an excellent article.

Me: I know that you have been researching various aspects of pediatric hemorrhagic strokes, such as risk factors and outcomes, and I was wondering if you could elaborate on the goals and direction of your research, as well as any results that you have gathered.

Dr. Jordan: My early research focused on non-traumatic intracerebral hemorrhage (hemorrhagic stroke) in children, helping to understand causes of intracerebral hemorrhage in children as well as predictors of neurological outcome. Our research showed that hemorrhage volume is a major predictor of outcome, described a bedside method to assess hemorrhage volume, and reported the frequency of hematoma expansion in these children. A hemorrhage grading scale was developed for children called the pediatric ICH score similar to score that has helped improve care in adults.  We reported the incidence and impact of seizures and epilepsy after ICH in children.

With a team of collaborators, I have studied the neurological complications of sickle cell disease. Children with sickle cell disease (SCD) have a 100-fold increased risk for stroke compared with healthy children. Working in collaboration with hematologists, I served as a site neurologist for two multicenter stroke prevention studies in sickle cell anemia. I am currently the chair of the neurology committee for several stroke prevention studies in pediatric SCD, one based in the US in very young children and one based in Nigeria.

Finally, I collaborate with neuroimaging researchers to study of novel MRI techniques to predict stroke risk in children and young adults with sickle cell disease assessing cerebral hemodynamics and cerebrovascular reserves.  These are my main grants right now.

Me: What are some general statistics on how common Moyamoya is within the population?

Dr. Jordan: A study that analyzed hospital discharge data from Washington and California in the western United States found an estimated overall Moyamoya incidence of 0.086 per 100,000 people per year, lower than in Japan.

Among ethnic groups in California, the Moyamoya incidence rate for Asians was 0.28 per 100,000 people per year, similar to the incidence in Japan. The incidence rates were lower for blacks, whites, and Hispanics (0.13, 0.06, and 0.03 per 100,000, respectively).

**Incidence is new cases of Moyamoya.  Prevalence is all the people known to have Moyamoya (not just new cases. The prevalence of Moyamoya is 3.2 to 10.5 per 100,000 people.**

Most people with Moyamoya are diagnosed between ages 5 and 14 years or in the 30s-40s.