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The Global Neurology Research Group has created a multilingual coloring book to explain epilepsy to children around the world and reduce myths and stigma surrounding seizure disorders.
My Thinking Cap, A Coloring Book About Epilepsy introduces us to Ella, Dot, and Jon-Jon, a young boy with epilepsy. While the three friends play in the park one day, Jon-Jon has a seizure.
The story follows Jon-Jon’s journey from this first seizure to the hospital, where they meet Dr. Syd, a friendly neurologist. Dr. Syd explains the wonders of the brain and how a funny looking cap helps to diagnose epilepsy. He teaches the children what a seizure is, and what to do if someone has one.
This educational resource provides support for youth living with epilepsy by promoting a positive understanding of the disease and dispelling myths and stigmas surrounding seizures and epilepsy.
In the interview below, we catch up with author Mia Borzello to learn more about this project. Ms. Borzello has spent the last few years working in an epilepsy lab at Massachusetts General Hospital.
Nearly a year ago, she began creating this coloring book as a fun, tangential endeavor to her time spent in the lab.
My experience in Tena, Ecuador. This is an area where neurological disorders —specifically epilepsy—are abundant, yet treatment is essentially non-existent.
Even with a population of about 13,000, there are no neurologists available in the area (the nearest neurologist is 4 to 5 hours away). Most of the time, people with epilepsy just go untreated.
Author Mia Borzello
In 2013, I traveled to Tena for the first time with a team of neurologists and medical volunteers. This group has made the trip to this rainforest community for the past six years to provide free medical care to epilepsy patients at a week-long clinic at Hospital José Maria Velasco.
While receiving treatment, patients shared stories about the hardships of living with epilepsy, specifically in a region where the condition is highly stigmatized and poorly understood. This magnified the necessity to increase education as well as treatment.
The need to boost knowledge and eliminate misunderstandings about epilepsy for Tena’s youngest patients was the impetus for my coloring book, My Thinking Cap.
Children everywhere, especially those in the developing world. The book is available in 10 different languages and there are more translations on the way.
Audience, accessibility and affordability. 50 million people worldwide (adults and children) have epilepsy. Of that number, 80% live in developing regions. Few children’s books have been written about epilepsy in English, and even fewer have been written in Spanish or any other language.
I created all the pages myself, and I hand-drew most of the pages. I also used Illustrator to create images using royalty-free clip art.
None. I did take an art class in high school, and I think my lowest grade in high school was in that class (B+) :)
Copyrighting! Originally, the book was called "Dora Explores the Brain," and featured Dora the Explorer, Diego, and Boots from the popular kids TV show.
I copy/pasted coloring book pages of Dora and her friends from Google to go along with my storyline, not realizing that it was copyright infringement.
Needless to say, all of those illustrations had to go. So I started over.
While creating the illustrations took some time, I'm really happy with how it worked out. Creating the coloring book became a labor of love, and I really enjoyed making everything myself.
THANKS! I like him too!
Originally, I was actually only going to have two versions of the book—English and Spanish. I realized that wouldn't do. Epilepsy is prevalent all over the globe, and the more translators I could recruit, the more beneficial the coloring book could be.
So the project kind of developed organically into a second phase, from creation to translation. Over the past eight months, I've been collecting these different translations.
Yes! The Mass General community has supported this project all the way through, from creation to translation.
I loosely based the character of Dr. Syd (left) on Sydney Cash, MD, PhD, my PI in the Cortical Physiology Laboratory at Mass General.
Other members of Dr. Cash's lab have supported the project by providing the French translation of the coloring book, and with the Hindi and Mandarin translations that are now in progress.
Within the larger community, I have had the amazing support of the Medical Interpreter team at Massachusetts General Hospital. I am so grateful to Anabela Nunes, Director of Interpretive Services, for being a part of the project.
Of the 10 translations of the coloring book, seven came from within the Mass General community.
Through this project, the recurring theme for me can be best captured by this quote, “If it's inaccessible to the poor, it's neither radical nor revolutionary.”
In my few experiences in international medicine, I expected that medical resources and personnel would be limited, and that there would be barriers to healthcare, but I had no idea that the barriers also extended to information and knowledge.
My Thinking Cap is available for download on the Global Neurology website. PDF files are currently available for download in the following languages: English, Spanish, Italian, French, Russian, Chichewa, Tagalog, Arabic, Portuguese, and Haitian Creole.
The Mass General Global Neurology Research Group, led by the Principal Investigator Farrah Mateen, MD, PhD, supports ongoing research and academic projects across the globe. Visit the lab website. You can also directly email Mia Borzello with questions about the coloring book.
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