She dreams of being able to play sports with her peers, to walk down the street without being stared at, to take a taxi without being treated like a leper and to enter a room without seeing horror in people’s eyes.
She just wants to be normal. Instead, Nonkoliseko Mndiyata is living a lonely existence in KwaNikhwe Village in Bizana in the Eastern Cape and her visions of a life as an active member of society are fading fast.
The 19-year-old has keloids – overgrown scars – on her face, neck, breasts and back and they’re making her life a living hell.
For the past 12 years, she’s had to adjust to life with these rubbery lesions and nodules that occasionally become infected and ooze pus. She lives with pain from the scar tissue and has never been able to do the things her peers take for granted, like playing hopscotch or simply sitting in a roomful of giggly girls sharing gossip.
It hurts being her, she tells us. “What breaks my heart is when children look at me and cry or adults stare at me. Kids in the community have always been scared to play with me. They run away from me when I go to play with them,” she says.
Sitting on a traditional crafted mat with her mother, Nokipuka Ntobayo (58), in their two-room house, Nonkoliseko tells a story of a desperate life. For the first seven years of her life she was a “normal” little girl – until an ill-fated visit to a traditional healer left her with physical and emotional scars.
Nonkoliseko was taken to a traditional healer who performed umqatshulo, a ritual that involves being nicked with a blade in various areas of the body. These tribal marks are meant to bring strength to a child – instead they led to years of misery for Nonkoliseko.
“Sometimes when I get into a taxi other commuters get out,” she says, weeping. “This really affects me. I am losing all hope of living a normal life.” She’s also been called a polecat because of the odour that sometimes comes with the lesions.
“This makes my pain worse.”
Her mother recalls how her daughter’s nightmare started. Just days after the visit to the traditional healer Nonkoliseko’s eyes became red, then growths that looked like boils developed on her face, body and ears.
The boils then burst, leaving scar tissue behind that grew and grew. Nonkoliseko also has eyesight problems – she’s completely blind in one eye and partially blind in the other although doctors don’t believe this is related to her skin problems.
The family has tried everything to help Nonkoliseko. She had an operation at Mthatha’s Nelson Mandela Academic Hospital in 2014 to remove the growths but they returned – and continued to grow. “She went for another operation at Inkosi Albert Luthuli Hospital in Durban but the same thing happened,” Nokipuka says.
What’s more frustrating, the mother of four adds, is doctors can’t explain why the growths keep coming back. “It hurts to see my child like this. I feel so despondent. When she’s in pain she can’t eat for days and no one in the house can sleep. She also misses school often.”
Nonkoliseko attends Zamokuhle Special School for visually impaired students in Bizana but teachers send her home from the hostel if she’s too ill to concentrate. “When these things burst she gets awful headaches,” her mom says. Things are so bad the teenager is years behind in school.
“She can barely finish a year of school,” Nokipuka says. “Children her age are in university but she’s only in Grade 7. It’s very sad for her and for all of us.
“She used to be my most beautiful child before she was troubled by this disease. I have lost hope. I have done all I can but nothing seems to work.”
Nosipho Nodwengu, Nonkoliseko’s former teacher, believes her learner could have gone far were it not for her scars. “She’s good at natural science, English and technology but her condition is derailing her academic progress.
In class the teen would ask for permission to sleep. The numerous hospital visits she needed didn’t help either. “When she was in pain you could see her shaking and in tears,” she adds.
“She couldn’t concentrate on anything and the teacher would have no choice but to send her home or to the clinic.” The teachers have tried to make life easier for Nonkoliseko by teaching her peers to accept her condition and they’ve responded well, she believes.
But Nonkoliseko tells a different story. She says they make fun of her and say she has “pies” on her face. “They don’t want to sit next to me and they push me out of the queue in the dining hall,” she says. She covers her face and neck with the hood of her tracksuit top to get some peace – but can do this only when the lesions are dry.
“All I want is to get rid of these things on my body – that will be my only sa
