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.






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