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.

Feel free to email me feedback at:

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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!



My Experience with Migraines

Migraines have played an active role of my life since the 1st grade. This was a year before my surgeries, and around the same time that I started getting T.I.A’s, or Transient Ischemic Attacks. I recall thinking that some invisible force was slowly squeezing my head from the outside, unable to make it stop. The headaches would get so bad that I would eventually vomit.

Back then, I had no idea what was causing the migraines and how to prevent them. It was a scary time for me, both due to a lack of knowledge about them and the pain they caused me. I have still had migraines post-surgeries, however there have been less and less every year.

After years of having migraines, I have noticed patterns in which I get them. In my experience, consistent lack of sleep has been known to lead to a migraine. Dehydration as well as tiredness have also been determined as factors towards migraine frequency.

My migraines usually start as I wake up in the morning. It often hurts to look at light or hear anything loud. Any movement of the head results in searing pain that subsides into a dull throb. As soon as I wake up with a migraine, I try to gauge its severity. If the pain is unbearable, I take an Advil. If not, I simply go back to sleep.

I usually wake up a few hours later with a dull headache. The pain has changed from sharp, erratic, and extremely painful, to a consistent and dull throb. The rest of the day after a migraine is sluggish, with no room for strenuous physical activity or horsing around. The day seems to have a haze over it, one that dulls everything.

This summer I have had several migraines. They have prevented me from going fly-fishing with my family, visiting the DMZ in Korea, and going to church. Migraines can take away an activity or even day from your life through limiting availability and activity. To best prevent migraines, I try to take my daily dose of Aspirin (prescribed to me since surgeries), get to bed early (too late for that tonight), and stay hydrated.

Thanks for reading, and feel free to share any of your migraine stories with me via email or through the comment section.

Quick update: I will soon be making an email specifically for Moyamoya and blog-related content.

The Future of This Blog (Update)

Hello Everyone,

Thank you for stopping by my blog, Living with Moyamoya. I have been blogging for almost three weeks now, and the site has gotten off to a pretty good start. I have written about a wide variety of topics, ranging from my own experience diagnosis to recovery to my brother’s broken ankle. Although I do believe in a free-spirited, not necessarily scheduled medium, it is not easy coming up with ideas of what to post every Wednesday and Saturday.

Regarding the blog, there are several things on my to-do list. Firstly, I need to figure out ways to branch out and get the maximum audience and therefore awareness. I am not sure how to approach this, but have recently found out that this blog will be featured on Stanford’s Moyamoya website. This is great news for me, as it helps ease the always pressing issue of networking.

This blog has also been difficult to manage for me, especially in regard to minute details. I have had problems managing comments (there currently are not any), sub-sections of my blog such as the About. Please, please, PLEASE let me know what problems you notice so I can try my best to fix them.

In addition, I need to figure out the overall direction of this blog in the coming months. I have been thinking a lot about the different forms this blog could assume. I could focus primarily on my own experiences within the realm of Moyamoya-related activity. There is also the potential for this website to act as a regular blog, about my current goings-on with the occasional Moyamoya post. Another idea that I had was for the blog to function as a hub for Moyamoya news or gatherings, although there are already outlets such as this.

This post is more of an update than anything, but its success is dependent on the replies of you readers. I would love feedback about how to:

  1. Change the Website (perhaps the format)
  2. Alter the scheduling/direction of my blog (if necessary)
  3. Improve in general


Thank you for reading, and my email is under the “Contact” tab.

The Burdens of Living with Moyamoya

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 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: