Out of the sun
September 25, 2013Before venturing outside, Jake Epelle is always careful to put on a wide-brimmed hat and a pair of dark sunglasses.
He has learned from his mistakes - his pale skin bears the early signs of skin cancer from over-exposure to the sun in his youth.
Albinos need to be careful to always take protective measures in the sun, because their bodies do not produce melanin, which gives skin and hair its color and helps protect against the sun's ultra-violet rays.
In Nigeria, it also means Epelle can't help but stand out among his dark-skinned fellow citizens. The social stigma surrounding the condition is immense in parts of Africa, Epelle says, adding that when he was born, his mother refused to recognize him as her child.
"There was an obvious gap between me and her to a point that I really didn't know her up to the time I was three. It was bad that my father told me … that at a point, I was sucking his own breast and that of my step-mum."
Discrimination against albinos can translate into problems at school and fewer job opportunities. It can also be deadly. There are reports of albino people being killed in parts of Africa because of a misguided traditional belief that they can be used for witchcraft rituals.
Cancer a constant risk
Epelle recognized that people like him needed someone to speak up for their rights and he set out to become that person. He started the Albino Foundation in 2006 to campaign on issues that concern albinos. The organization has been instrumental in persuading the Nigerian government to pay for medical treatment for more than 500 albinos who have suffered from skin cancers in the sun-scorched African nation.
The foundation has put a special focus on raising awareness among schoolteachers.
Today, Epelle and his team are visiting a primary school in Nigeria's capital, Abuja. There are three albino children in the school, and Epelle wants to make sure their teachers know how important it is to keep them out of the sun.
"Between the hours of nine and five, they should playin the classroom," he instructs.
Driven by rejection
Many albinos struggle with poor eyesight as a result of the lack of melanin, which is important for the development of the optical system. Epelle recalls how hard it was to cope with the problem in school.
"I couldn't see the board. I was always struggling to write, copy notes. I had to do extra reading at night when others were sleeping. There were a lot more things others were doing I couldn't do, so I got frustrated and just couldn't continue. I had to struggle all through."
He finally quit school, for over a year. But he did then resume his studies, which makes him an exception: most albino students never return once they have dropped-out. Epelle wants that to change and has started a new project designed to bring albinos back to school.
Keeping them there, however, requires that teachers are aware of their needs, such as seating them at the front of the classroom and giving them, and other visually-impaired children, extra time to complete exams.
His own experiences of rejection and discrimination have made Epelle determined to do everything he can so that no albino person faces disadvantages on the basis of skin color.
"Every time I meet an albino, I want to make sure that I really leave that person better than I met him," he says.