CHDM summit to assist those with condition
which are sensitive to the sun (photophobia). They may also have impaired vision and be prone to squinting and nystagmus – fast involuntary movements of the eyes.
Their skin is pale in colour, with freckling or pigmented patches sometimes developing when exposed to the sun.
Hair colour ranges from white, yellow or light brown to slightly red, with eyelashes usually taking on a brown colour.
These physical characteristics vary from person to person.
“It was when my teachers pointed out that I had trouble seeing that my mother realised that albinism does not just affect the pigmentation but eyes too.
“From then, I learnt that most of us, if not all, are partially sighted.
“I was fitted with special glasses but my education was affected despite this. I ended up moving to three different schools,” Ntini said, adding that she had even had a stint at Filedelfia Secondary School in Pretoria, which caters for people with all types of physical disabilities.
“But I didn’t feel like I was disabled so I came back [home] after only a year.
“I gave up on mainstream education and ended up completing my matric at John Knox FET College.
“From there I completed a computer studies diploma at the South African Institute, which was based at Rubusana [Mdantsane education headquarters] at the time.
“From there, I decided to try for a national diploma in marketing at Walter Sisulu University and I’ve been working ever since, getting my qualification.
“The only negative thing I ever experienced because of being born with albinism is that it takes me long to write because I can’t see.
“During my studies, I was advised by a lecturer to write to the education department to inform them of my problem so I could be given extra time in tests and exams, which really helped.
“Other than that, I had a good childhood. The other kids never teased me for being different and I was never an outcast in university.
“My family loved and supported me, even now. There were only three incidents in my entire life where I was referred to as an inkawu [a monkey] but I told those people off immediately and I have not had any such issue since.”
Bizana-born Sonwabo Masanga, who also suffers from albinism, said his experience of living with the condition was very different.
The second-born of five children, Masanga said he always knew he was different from the time he was a young child, with community members constantly referring to him as mlungu (a white person).
After only reaching Grade 8 because of the constant struggle with his poor eyesight, Masanga said it was on a visit to a village near Durban that his life was threatened for the first time.
“A group of men in this village came to me and, speaking among themselves but loud enough for me to hear, said their businesses were struggling to make money and things would go a lot better if they had some muti [traditional medicine] for good luck.
“One of them suggested cutting off one of my hands and said they could fry it and use the oil to make the muti, which would bring them luck. I knew right then and there that I had to leave that place quickly.
“It was the same back home. Every now and then I get people who say that to me. Some say they want an arm or a leg to make muti, which will either bring them luck or cure them of certain diseases.
“It’s scary to hear things like that because you never know if they will one day act on it,” he said.
Social development spokesman Mzukisi Solani said an albino woman from the Chris Hani District was recently killed and her private parts were mutilated by her partner, who is believed to have used them to make traditional medicine.
According to Solani, despite the condition affecting thousands of people globally, there were still myths and common misconceptions in some parts of southern and eastern Africa, where body parts of those living with albinism are believed to hold magic powers.
As part of their commemoration of Albinism Month, the department is hosting a two-day albinism summit in Queenstown this week, where increasing acts of violence, discrimination and other problems affecting the albino community in the Eastern Cape will be discussed.
He said: “Although there are still no verifiable statistics on the number of people living with albinism or those who have gone missing or been killed in the Eastern Cape, the Chris Hani District Municipality has seen a worrying trend of abuse and killings. Hence the summit. It aims to find preventative measures to stop attacks and discrimination against people with albinism.” Solani said the department had set aside R31.2-million this financial year for programmes aimed at empowering persons with disabilities in the province. The department will also facilitate the launch of an Albinism District Forum in the Chris Hani District Municipality. This structure will be a safe environment where people with albinism will address their concerns. Masango concluded: “People sometimes treat me like I have a contagious disease. Like when I get in a taxi, the person I’m about to sit next to moves up a bit or I get strange looks when I speak as if I’m stupid. “People need to be educated so they know we are normal, just like them.”