Note: we are republishing this story which originally made the news in December 2020.
Shilah Madison Calvert-Yin, a 10-year-old from Melbourne, Australia, has become an inspiring figure in embracing her unique condition, spreading awareness, and building confidence. Shilah was born with a rare genetic condition known as uncombable hair syndrome, which leads to hair shafts shaped like hearts and missing a particular protein necessary for straightening the hair.
Throughout her life, Shilah has faced teasing from bullies who likened her to someone who had “stuck her finger in a power socket.” However, rather than succumbing to the taunts, Shilah decided to embrace her distinctive and fluffy locks, demonstrating remarkable resilience and self-acceptance.
Shilah’s mother, Celeste, a teacher, has been an unwavering source of support and encouragement for her daughter. Together, they’ve embarked on a mission to share Shilah’s story and raise awareness about uncombable hair syndrome. Their Instagram account, created to document Shilah’s journey, has garnered over 15,000 followers.
Shilah candidly shared her experiences of being teased and called “fluffhead” at school. Her unique hair often poses challenges, especially in windy conditions. While she has learned to appreciate her hair’s uniqueness, the teasing at school remains a hurtful aspect of her life.
Celeste recounted how she noticed her daughter’s hair developing its distinct characteristics when Shilah was just three months old. Her brown baby hair fell out, making way for the unusual fuzz that grew straight upward.
As a young child, people’s curiosity sometimes led them to take pictures of Shilah without permission, which was unnerving for her and her mother. Over time, Celeste and Shilah faced comments and challenges, with kids wanting to touch and pull her hair.
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Yet, Shilah’s uniqueness became a source of humor when she participated in a Jurassic Park-themed event in a lab coat. A stranger observed that she resembled Doc Brown from “Back to the Future,” which has since become a playful in-house joke.
Shilah’s hair condition presented a series of challenges as she grew older. Her hair became dry and fragile, leading to matting overnight. Untangling her hair each morning became a source of distress, resulting in her hair remaining short at the back.
At the age of four, Shilah took matters into her own hands and cut off the shorter portions that didn’t reach her desired ponytail. It took over two years for her hair to grow back, during which she wore a headscarf to hide her spiky hair.
The unique characteristics of Shilah’s hair puzzled hairdressers, some of whom incorrectly suggested she visit salons specializing in Afro hair. Her hair is notably different, remaining soft without needing oil or deep conditioning, and heat treatments can damage it.
Shilah wasn’t diagnosed with uncombable hair syndrome until she was seven years old when a dentist noticed her condition. The condition causes her hair to grow “heart-shaped,” missing a protein and leading it to grow outward, resulting in its frizzy appearance. Besides the unique hair, uncombable hair syndrome can also cause weakened enamel, porous bones, and brittle fingernails.
Celeste was overjoyed when they finally received a diagnosis for Shilah’s condition, and it was an unexpected encounter with a dentist that led to the diagnosis. They met a dentist who had done a study on genetics and abnormalities and knew all about uncombable hair syndrome.
Despite the challenges and uncertainties, Shilah has remained strong, embracing her distinctive hair, and, with the support of her mother, sharing her story to spread awareness about this rare condition. Her journey serves as an inspiration for self-acceptance and the importance of embracing our differences.
The story of Shilah Madison Calvert-Yin underscores the significance of acceptance, understanding, and embracing uniqueness. Her journey serves as a powerful reminder that it’s our differences that make us unique and beautiful.
