The School That Has Become an Oasis of Hope and Love

A SCHOOL in Windhoek has become an oasis of hope and love for children living with albinism.

Albinism is a genetic disorder that causes skin, eyes and hair to produce little or no melanin, which results in lack of pigmentation of the skin. The 2011 census showed there are more than 1 256 people living with albinism in Namibia.

At the School of the Visually Impaired, 28 children living with the condition are enrolled.

The school, which offers both primary and secondary education, gets support from companies in the form of clothes and the Ministry of Health and Social Services which donates cosmetics.

Helvi Ndapandula (13), a grade 8 pupil, who before coming to the school, used to think she was the only one with albinism has found a home and loving friends at the school behind the Katutura State Hospital.

Growing up in Ohangwena, Helvi initially thought she was the only person living with albinism but this perception changed eight years ago when she enrolled at the school.

Helvi, who has never met her father, says before coming to the school, children in her neighbourhood taunt and laugh at her.

“The children in my area tease and bully me. They call me names and say ‘Look at this albino’. They run off, spitting into their shirts in disgust whenever they saw me,” Helvi says, with tears running down her cheeks.

When she asked her mother why she looked different, Helvi said her mother never explained it to her until she came to the school where she was taught about her condition.

Alfred Kuhanga (20) a Grade 9 pupil from Tsumkwe, says he only experienced problems from the community when he moved to Windhoek for school.

“When I walk in public, I hear children calling me names like ‘white ghost’ and ‘vampire’. I also feel it when older people stare at me,” explains Kuhanga, who was diagnosed with cancer last year.

Kuhanga’s skin cancer started as an ordinary mole growing on his forehead but quickly grew to the size of a golf ball.

His teacher, Annette Shililifa, says when Kuhanga came to the school, he had discoloured skin patches and sores on his body that were caused by too much exposure to the sun.

“He was constantly bleeding. His sores never healed, so we took him to a doctor for observations. We found out then that he had cancer,” she explains.

Another pupil, Nicodemus Nehoya (14) from Ondangwa, tells The Namibian that he never experienced much bullying and even when he goes home during the holidays, he is respected and treated just like any other child.

Two-year-old Andreas Joseph of Babylon informal settlement in Windhoek, who also has the condition, has a loving family.

His mother, Ileni Amutenya (22) says she never thought her son would be born with albinism.

Amutenya says when she gave birth, nurses at the hospital did not give her information about albinism. Fortunately for her, Andreas is not the only one in the family with the condition.

“Andreas’ father has siblings with the disorder. His extended family has had at least 30 people with the same condition,” Amutenya reveals.

At his age, Andreas seems to understand his condition because Amutenya says the boy does not go out in the sun without his hat. “He actually loves his hats. He never goes out of the house without wearing them,” she explains.

When The Namibian visited the family, Andreas was playing with a plastic toy he had borrowed from his friend who stays just two houses away.

Support in Namibia of Albinism Sufferers Requiring Assistance (SINASRA) founder Dr Peter Stoermer, who also treats children from the school, says most of the children from the villages are at risk of skin cancer because their parents are not informed on how to protect them from the sun.

SINASRA supplies protective clothing and sun screen and disseminates relevant information on health for the people living with albinism. It also dispenses special telescopic spectacles, which improve the vision of people living with albinism.

“Preventing sunburn is important, but not sufficient to prevent damage to the skin. Once the skin is damaged, it’s hard to repair it. That’s why it’s important for people living with albinism to wear hats, sunglasses and use sunscreen,” Stoermer says. He also argues that the task of preventing skin damage is difficult, since the majority of children with albinism live in remote areas, and that “most children come too late for treatment”.

“If the diagnosis is made early then it can be treated. However, there are some cases where people cannot be treated properly because they would have come too late,” explains Stoermer.

He, however, says people living with albinism can enjoy outdoor life if they limit their exposure to sunlight, wear appropriate hats and clothing, and use sunscreens.

In the case of people like Kuhanga, Stoermer says their condition is not easy to reverse because the diagnosis was obtained very late.

Paulus Johannes(30), a member of Stoermer’s organisation, recalls how difficult it was growing up in a small village of Onamanvo about 20 kilometres outside Omthiya under his grandmother’s care.

Johannes works for an information and technology company in Windhoek. He attended the Polytechnic of Namibia but dropped out before graduating.

From an early age, Johannes says, some people in the community called him an Ekishi – a derogatory word for albino in Oshiwambo. Worse for him was that some of the people who bullied and discriminated against him were from his mother’s family.

“They discriminated against me and made me do things against my will,” he says, holding back tears, adding that apart from the bullying, nature appeared to conspire against him, too.

“Walking in the sun was especially a problem,” he points out. “My skin was burnt and I developed blotches. I was ignored when I complained about my condition.”

The open skin sores and his poor vision brought him more ridicule. “I couldn’t see properly, so I always bumped into objects.

They would laugh at me because they thought I was doing it on purpose. They did not realise I had trouble seeing because of the nature of my condition,” adds Johannes.

The ridicule followed him to school where, apart from being mocked, Johannes says none of his classmates sat close to him and as a result, he spent most of the sitting at a desk by himself.

“I was verbally abused by my classmates. Many of them would call me names. They said I was a ghost and a vampire. In fact, many of them did not want to sit next to me or even look at me,” he remembers.

When the ill-treatment worsened, Johannes says he “just got annoyed by everything and everyone”.

“So I became aggressive towards those who looked at me differently,” he says. “I know people are educated about albinism but they still feel we are endangering them or we do not belong in this world. It’s sad to see that people are very ignorant about the disorder.”

The mocking is not the only pain Johannes has endured.

Like many other people living with albinism, his greatest fear is never to know and enjoy a romantic relationship.

“I’ve been in relationships where my significant others were with me but they had other intentions. Some women were just with me to see what it is like to date an albino. They were not there for love,” says Johannes, adding that he has lost women because of the stigma attached to albinism.

Stoermer suggests that public awareness campaigns should also be held to end the stigma associated with albinism,while Shililifa believes that the problem starts when the public and parents of people living with albinism fail to understand the condition.

“Most parents are not educated about it. When we sent the children home for school holiday, they come back looking different since most of them are not taken care of,” Shililifa explains, adding that most of the children return to school without their hats or with their sunscreen finished.

“Most of them always come back with blotches and sores all over their bodies,” she says, suggesting that this is caused by lack of knowledge on how to care for the children.

She charges that some parents don’t ask what is in their children’s bags when they pick them up. “When they don’t, we tell them there is a hat and sunscreen for their protection.”

Source : The Namibian