The story of Sushmita
12/21/2024: Imagine standing before your class, accused of something you didn’t do. Your heart races, shame burns your face, and judgment pierces deeper than words. This was my childhood—a life shaped by Amelogenesis Imperfecta (AI), a rare genetic condition that left my teeth fragile, discolored, and painfully sensitive. But AI didn’t just affect my smile; it shaped how the world saw me.
At 13, I learned its name, but by then, I’d already endured stares, questions, and ridicule. A teacher once accused me of chewing tobacco during a school hygiene check. My explanation fell on deaf ears, leaving me humiliated and in tears. My father’s words that evening changed everything: “Your smile isn’t just about your teeth; it’s about the person behind it.”
His quiet strength inspired me to persevere through relentless dental treatments—veneers that failed, surgeries for impacted teeth, and endless root canals. At 22, I faced my most daunting procedure yet: surgery for a cystic lesion. Battling hemophobia, I learned to advocate for myself, requesting tailored care and finding strength in my vulnerability.
Growing up, the comments cut deeper than the condition itself. Strangers offered unsolicited advice, children asked blunt questions, and neighbors judged my hygiene. Yet, their words never defined me. I embraced my introverted nature, excelling in academics and social work, channeling my energy into what truly mattered.
Today, halfway through treatment, I’ve turned pain into purpose. I share my story through blogs, collaborate with dentists to improve care for AI, and am preparing to present my case study at a medical seminar.
Rare Disease Day reminds us: awareness must lead to action. To those with rare conditions—your story matters. It educates, inspires, and drives change. And to everyone else—kindness costs nothing but can change everything.
I smile today not because my teeth are perfect, but because I own my story—and I’m proud to share it.