About "The Sun and Me"
Imagine if every time you went into the sun, you couldn’t stop waving your hand in front of your face, which was causing hundreds of mini seizures in your brain. This was a challenging and sometimes overwhelming journey for Uma and her identical sister, two girls who had a condition called Sunflower Syndrome. But with the support of their parents, doctors, and remarkable resilience, they managed to persevere, overcome, and eventually jump back into a happy, sun-filled childhood. This is The Sun & Me, a touching true story of a girl with a rare disorder who never gave up.
About The Author
When this book was published, Uma Nambiar was a senior at The Archer School for Girls in Los Angeles. She and her identical twin sister were diagnosed with Sunflower Syndrome at three years old, and after years of navigating this very challenging form of epilepsy, they ultimately found a medication that controlled the disorder. Through her experiences with Sunflower Syndrome, Uma learned the values of resilence and support. She works to cultivate her voice and feel heard through her writing. Uma hopes this book will be a beacon of support for others who are struggling with rare disorders and other life challenges.
What is Sunflower Syndrome?
Sunflower syndrome is a rare form of photosensitive epilepsy that typically begins in childhood. It is characterized by individuals, often children, deliberately turning toward bright light sources—especially the sun—and waving their hands in front of their eyes while staring at the light.
This behavior can trigger seizures, usually absence seizures, which involve brief lapses in awareness. The hand-waving and light-gazing behavior appears compulsive and may be mistaken for self-stimulatory behavior or daydreaming, making diagnosis challenging. Treatment often involves anti-seizure medications and strategies to reduce light exposure.
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