In the late 1940s, Dr. Theodore Woodward, a professor at the University of Maryland's School of Medicine, used the metaphor "zebras" to refer to patients with rare health conditions.
Today, around seven thousand rare health conditions have been identified; collectively, they impact 350 million people around the world. As the likelihood of misdiagnosis is high and treatment options are limited, these illnesses are particularly challenging for patients and their families.
I see the human body as a book with six billion letters. One letter being in the wrong place can sometimes cause a rare health condition.
Through the letters of the alphabet and watercolor paintings, we have transformed complex rare conditions into recognizable and relatable images.
When the letters of the alphabet stand alone, their impact is small; when they come together, the possibilities are endless. Like the letters of the alphabet, we must together to understand, diagnose and treat rare health conditions.
An excellent read for children with rare health conditions and well as those without, "The Zebra Alphabet" shares the message that we have far mor in common than we know.
We celebrate each unique child.
Written by Aditi Kantipuly
Illustrated by Diana Cojocaru
Aditi wears a lot of different hats. When she's not wearing the hat of a writer, she's busy being a doctor.
She hopes that the Zebra Alphabet can serve as a way to connect with the world and those around us. Inspired by the patients and families she's met on her journey as a Fulbright Scholar in India.
Sometimes she makes magic out of molehills and chai.
The Children's Hospital Association (CHA) advances child health through innovation in the quality, cost and delivery of care with over 220 hospitals in the United States, Australia, Canada, Italy, Mexico and Puerto Rico. The book has been endorsed under “Resources for Children’s Hospitals Child Life Programs”
Link to Resource
Book featured in annual Rare Disease Day conference to observe global awareness of rare genetic conditions, along with 103 countries. Globally, 300 million individuals have a rare disease, of this estimate, 30 million Americans have a rare disease.
The Cystic Fibrosis Foundation interviewed Aditi (author) about the Zebra Alphabet book and the inspiration behind it.
Link to Interview A Johns Hopkins Affiliate hospital dedicated to improving the lives of children and young adults with pediatric developmental disabilities. Hospital sees approximately 19,000 children annually. Utilized the artwork from the book into a fundraising initiative.
Total value of exhibit: $2007 dollars.
A not-for-profit media company specializing in rare disease content. The book was featured in digital magazine: “Rare Revolution” which is based in the United Kingdom and seeks to give a voice to those affected by rare conditions and the charities that represent and support them. Featured in Issue 11, Spring Edition 2019.
View the Issue
The Visual Snow Initiative (VSI) recently sat down with Aditi Kantipuly to discuss the Zebra Alphabet that mentions Visual Snow Syndrome.
Read the Article
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