Kawana Dandara Tavares de Melo was born blind, and no one had detected it during the pregnancy.
She spent four months hospitalized. The doctors weren’t even sure whether she was a girl or a boy, and they performed eyelid reconstruction before she was able to see. She had Barber-Say syndrome, a congenital ectodermal dysplasia that affects approximately 1 in 1.000.000 live births. According to reports at the time, she was the only person with this condition in Brazil and the third in the world.
Growing up this way came at a cost. According to sources, she faced prejudice because of her appearance and even assaults by other women at the institution she attended. Today she is 26, a nursing technician, and during the pandemic, she started posting videos on TikTok. At first, the criticism came, and she thought about giving up. But messages of support and from people who wanted to learn about her condition also came. Today she has more than 485 thousand followers, and her videos reach 7 million views.
So much so that some medical websites now call her syndrome “Dandara syndrome”.
