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


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:

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.





A Lot to Be Thankful For

This year, my family and I drove down to Maryland to visit my Grandma, Grandpa, and cousins. I had a great time, and especially enjoyed spending time with my Grandparents and Maryland cousins, neither of which I see often during the year. I also played with my two baby cousins, both cute little boys at ages 2 and 4.

Having quality family time this Thanksgiving made me truly appreciate how lucky I am. Nobody from my Dad’s side of the family had passed away yet, and all were healthy and happy. Looking around the table at a lively, charismatic, and loving family at dinner on Wednesday — a delicious, highly anticipated crab feast — gave me a deep sense of gratefulness.

I am most thankful for my family’s supportive and fiercely loyal nature. During the undoubtedly roughest point in my life, when I was diagnosed and treated for Moyamoya disease, my family stood with me. My uncle helped spend time with my siblings while my parents — both sources of happiness and good in my life — flew with me to Stanford. My Grandpa, then the head of the Anesthesiology department at John’s Hopkins Hospital, allowed my case and MRI’s to be seen by one of the country’s leading experts on Moyamoya, Dr. Lori Jordan. The rest of my family, as well as my friends, provided immense love and support for me during my surgeries and treatment, and made my experience with Moyamoya immeasurably better. Without them, I would not be who I am today.

Not to say that Thanksgiving is the only time during the year to be thankful, but it certainly brought to my attention all to that there is to appreciate. I tend to forget about and take for granted things that I should be grateful for, and things that I rely upon every day. In the midst of a fairly busy and preoccupied life, it is easy to ignore the factors that contribute to success.

To my family — especially my beloved Mom and Dad — and my friends that support and love me, thank you.




Great News for the NYC Community


This month, NewYork-Presbyterian hospital, with the help of Weill Cornell Medicine, Columbia University Medical Center, and the Fire Department of New York (FDNY), has launched a Mobile Stroke Treatment Unit (MSTU). This will be the first of its kind on the East Coast, and will be deployed and utilized through the New York’s 9-1-1 system.

There has long been a need for something of this sort, a way to minimize damage done by strokes. According to Matthew Fink, M.D, the Chairman of the Department of Neurology at NewYork-Presbyterian’s Weill Cornell’s Medical Center, nearly 800,000 people in the US will have a stroke. MSTU’s are vital in stroke cases due to their speedy treatment services.

The MSTU’s in NYC will be run by two paramedics, a CT technologist, and a neurologist. The vehicle will be equipped with a CT scanner, that wirelessly transmits the images to a neuroradiologist. The MSTU’s will be efficient in treatment, and effective at minimizing the time between a stroke starting and treatment. The time saved be a MSTU — rather than being transported to the emergency room after the stroke has hit — can be the difference between a healthy recovery, paralysis, or death.

When I found out about the launch of this initiative, I was overjoyed. There is a real need for a function of this kind in the city, and one that I sympathize with. Although I have not suffered any serious strokes before and after my surgeries, it was very lucky that that was the case. If I had been misdiagnosed, as I was the first few doctors visits, I would most certainly have suffered a stroke.

This unit will be crucial for people like me who have Moyamoya, but also for anyone who has a stroke. What surprised me and pleased me the most about this discovery was that there was this much attention drawn to the stroke community and stroke awareness. I believe that this is an important milestone for the community and one that could have a positive impact.

Check out these websites for more info!





“There is No Such Thing As a Coincidence

This is the second installment of my “Parent’s Perspective” (written by my mother):

The headaches were so bad that Reddy would cry in pain— for hours.  Nothing helped.  Not Aspirin.  Not Tylenol.  Nothing.  We felt so helpless not being able to do anything to lift the pain and provide relief for our little boy.  I didn’t even know that children could have such bad headaches.  Most times the pain would get so bad that he would vomit violently and then get some small measure of relief.  Enough to collapse into a retreat of sleep.

When the headaches struck, and they did so often back then, we would sit by Reddy’s bed as he alternated between howling and whimpering from the searing pain in his head.  All we could do was watch and hold his hand, careful not to move him which would further exacerbate the pain. And we would pray.

We realized that prayer was the only thing that we could offer Reddy.  Prayer for an answer.  Prayer for healing.  Prayer for comfort.  The medications, the endless doctor visits, the steady stream of tests— none of that was helping.  Praying with Reddy not only gave him comfort when our own words failed to soothe, but it also gave us an anchor.  It was the one thing that we could do when all else was failing us.  It was only later that I saw how God was at work all along.  There is no such thing as a coincidence.

About a month or so into Reddy’s medical journey, after all the tests and doctor visits and no answers, our pediatric neurologist suggested that Reddy’s “symptoms” were the result of an overactive imagination.  I desperately wanted to stop all the testing, the hospital visits and believe that nothing was wrong with Reddy, but I knew in my heart that was not the case.

“Coincidence #1”

Months earlier, Reddy’s godfather (a doctor) and godmother had excitedly told us during vacation together (before Reddy’s symptoms were even noticed) about their friend’s wedding that they had attended in Korea.  It was a joyous miracle that this wedding even happened and that their friend was able to down the aisle because the previous year had been a medical nightmare.

Their friend had been misdiagnosed time and time again over the course of a year, enduring a stroke and unnecessary medical treatments and procedures.  Thankfully, she was finally diagnosed correctly— she just happened to have Moyamoya disease.  I think that I heard the name and then promptly forgot it because it had no relevance for me.  I was just happy to hear that their friend got surgeries (at Stanford) that saved her life.

So when our friend heard that we had still not found out what was wrong with Reddy, but heard his symptoms which sounded so similar to his friend’s, he suggested that we ask our doctor if Reddy had Moyamoya like their friend.  But we told him that he did not.  When asked weeks earlier, Reddy’s pediatric neurologist had actually mentioned and ruled out Moyamoya at our first visit when he ran through a list of things that could have caused Reddy’s symptoms and dark spots on his MRI (he never even noticed the “puff of smoke” network of blood vessels that laced his brain— a text book illustration of MM disease).

“Coincidences #2 & #3”

After seeing the almost ten doctors in NYC, the one diagnosis that they all seemed resigned to was that there was a parasite in Reddy’s brain.  However, this kind of parasite was typically found in people who ate undercooked pork or lived in the Caribbean— neither of which applied to Reddy.  It just did not sound right.  But we sent his blood to be tested anyway. Our dear friend (Reddy’s godfather) pressed on and urged us to go to Johns Hopkins where Reddy’s grandfather just happened to be an anesthesiologist to get a second opinion.  I didn’t want to subject Reddy to any more poking, prodding, testing and hospital waiting.  Thankfully, my husband did not agree and asked his father if he could get an appointment for Reddy.  My father-in-law’s friend just happened to be the head of pediatric infectious diseases at Johns Hopkins and he was able to see us the following week.

We had our appointment with the pediatric infectious diseases doctor and he drew more blood to be tested.  He told us that it was unlikely that Reddy had this parasite given his lack of risk factors and symptoms.  We then asked if he could pass along Reddy’s MRI films to the pediatric neurology department for them to take a look.  We did not know where else to go and were desperate for an answer.  He told us that he would send the films over but warned that we were not likely to see one of their doctors for months because of their wait unless it was a matter of life and death.

My heart dropped when I received a call just a couple of hours later asking us to come in the next morning to see Dr. Lori Jordan, pediatric neurologist.  This was bad news.

“Coincidence #4”

Dr. Jordan just happened NOT to be at lunch when the films arrived at the pediatric neurology department.  The films could have landed in the hands of any of the other neurologists there, but they just happened to land in Dr. Jordan’s hands— one of our country’s foremost experts on Moyamoya disease.

We were seated with Reddy in her office staring at Reddy’s MRI films.  Dr. Jordan pointed to the spindly blood vessels, listed Reddy’s symptoms and told us plainly that Reddy had Moyamoya disease.  In fact, the MRI’s showed a “textbook” case.

I felt myself sinking, falling out of my body and watching the whole scene unfold disembodied from myself.  I heard Dr. Jordan speaking—Reddy needed surgery immediately.  The frequent TIAs were a precursor to a major stroke.  We had to do something.  But I could not feel.  If I let myself feel I would be crying hysterically in disbelief, frightening my son who did not understand what was going on. I knew that I had to be strong for Reddy because we were about to embark on path that I had never expected to go down.  This was not the story I imagined for my child.

A MM Survivor’s Guide to School

This past week I, along with most of the country, started school. The beginning of the school year is the best time to develop healthy habits, especially for students with Moyamoya.

At my school, I let all of my teachers and sports coaches know that I have Moyamoya. Although almost none of them initially know what the disease is, I explain to them how it can affect me. It is crucial to be on the same page with the adults around you during school because, in the event of an emergency, it will be difficult to have to explain what is going on. These faculty members will not only be better suited to help in the event of an emergency, but will also know what is going on with you in general; they will be aware that you need to stay hydrated, cannot have anything that restricts blood flow to the head, cannot hyperventilate, etc.

Despite almost never being in situations where my teachers or faculty needed to help me, it is safer and more reassuring to have the options available. The only times that I was given “special treatment” were when I was allowed to go outside the class and get water whilst others could not. This experience made me feel uncomfortable and alienated from my classmates. However, it is extremely important for all of the adults in your life to be aware that you have Moyamoya, and that importance cannot be understated.

In school, it is critical to stay hydrated. I have had days where everything just flew by in a blur, and it was only at the end when I realized that I have not been hydrating. Remembering to drink water can be the most difficult aspect of staying hydrated, and one of the best ways to stay on top of it is to carry around a water bottle.

Investing in a BPA-free water bottle is a great idea, and bringing it from class to class can ensure maximum hydration. You can fill it up at water fountains or in the cafeteria, and even bring it to sports after school. An important notion to be aware of is that there is no downside to drinking tons of water. It is better to air on the side of more water than less, simply because the only effect will be more frequent urination.

My last tip for students with Moyamoya is to know one’s body. Having a good sense of your limits, and what you can and cannot do is the best way to keep healthy. Using common sense and not doing anything stupid, keeping in mind your limits, helps immensely.

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“Children Don’t Have Strokes… Do they?”

Hello Everyone,

I apologize for how long it has been since I have posted. School is about to start, and preseason, preparation, and family have kept my busy.

In the coming weeks, I will be doing the Parent Perspective segment that I have previously promised. The one that I will be posting today was written by my mother, and is Part 1 in a short series.

Here it is:

No one expects a child to have a stroke.  Much less three.  All before the age of 8 years old.

The first one seemed innocuous enough.  He says that his arm feels funny.  Maybe his arm fell asleep.  Maybe he doesn’t have the words to properly describe what that feels like.  But it does seem strange that he feels like he can’t move his arm…

The second one seemed like a case of sleep walking and talking.  Why are his words all jumbled up?  Is he speaking gibberish in his sleep?  But he looks wide awake and seems like he thinks what he is saying makes total sense.  “Go back to sleep to honey.”

The third one seemed like a case of his legs falling asleep.  But then while walking to the bathroom to brush his teeth, he started to stumble and fall.  I picked him and propped him up on the toilet seat so that he could brush his teeth.  He slumped and I had to grab him before his head hit the sink.  Something was definitely wrong.

This started the journey of trying to figure out what exactly was wrong.  From the spring of 2008 to the fall of the same year, we saw what seemed like an endless stream of doctors from neurologists and neurosurgeons to neuroradiologists to hematologists and cardiologists and infectious disease doctors.  No one seemed to know what was wrong with Reddy.  In fact, the pediatric neurologist that we were seeing had the audacity to suggest that the symptoms that Reddy was exhibiting (which we later learned were TIAs) were the result of an over-active imagination.

At this time, Reddy seemed like a totally normal and healthy boy outside of the fact now his arms and legs would go occasionally (and increasingly more often) go “numb” and give out.  I wanted to believe the pediatric neurologist, but i knew two things about my son- 1) he would never miss out on summer vacation to willingly subject himself to what seemed like never-ending visits to hospital waiting rooms, blood draws, tests, scans, doctor interviews and 2) my son did not have THAT active of an imagination.

I wanted to believe that doctor and give Reddy a break from hospitals and tests.  Maybe it was me who was making Reddy think that something was wrong with him by taking him to all these doctors.  He looked so normal.  Healthy.  But then his arms and legs would go “numb”and I knew something was definitely wrong.

THANK YOU for reading and see you again!!!!!

Email Saved Me


During the few months in which I had my surgeries, I was extremely lucky. The process of being operated on twice (on my brain as well!) at the age of seven was not very pleasant. I often walked around the hospital with multiple IV’s stuck in my arms. However, I was fortunate enough to be able to have several sources of happiness at my disposal, all of which helped me get through my operations. It is not easy to find ways to keep oneself occupied in the hospital, and being kept busy/entertained during the rough times can be a life-saver.

One of the activities that kept me going during my surgeries was email. Although emailing does not seem like the most rejuvenating or exciting of actions, it served as a way to connect with friends and feel a sense of normalcy. Before my surgeries, my class was learning how to type on a keyboard. Before I was about to leave to go to Stanford for operations, my recently-passed teacher Julie had recommended for me to practice my typing while I was away.

Emailing friends gave me a genuine sense of being back with them and made me feel less lonely. Despite receiving gifts and nice letters as well as having my loving mother and father stay with me in the hospital, there remained an unmistakable sense of loneliness. I remembered thinking that there was not anything in the entire world that I would not give to be normal.

I often think about the things that helped me through my time at Stanford, and the common theme seemed to be a strong support base. Through the archaic email system of the late 2000s I was able to access a key part of my support base back in the city. My class was unforgettably kind and thoughtful to me during my time away in California. I missed several class trips to landmarks around Manhattan, one of which was a trip to the Empire State Building. My classmates even held up a signs that read, “We Love Reddy” on the very top.

The level of inclusion and care that I felt was very powerful, and is something that I am still grateful for. Kindness and support can transform an experience, changing it from a traumatic nightmare to an overcome-able obstacle. But when all is said and done, it started with email.

For everyone wanting to stay updated with this blog, you can subscribe to this page on WordPress to be notified every time I post.

Additionally, I will be altering my posting schedule for this blog seeing as school is coming up and there will be less and less time to write. I will try to post ONCE a week starting in the next few weeks and the posts will most likely be on the weekend. Again, subscribe to this blog for updates.

Coming up soon will be a “Parent Feature” blog segment that will incapsulate the experience of having a child with Moyamoya disease.

Thanks for reading!