"We were thought to be bewitched."
©CBM
On World Albinism Day, CBM calls for more support for those affected.
People with albinism are discriminated against and persecuted worldwide and even killed in some regions of Africa. The reason for this is the widespread myth and dangerous misconception about their skin colour. As "white blacks" they often live dangerously. On World Albinism Day on 13 June, CBM draws attention to the situation of people with albinism. CBM educates people and ensures that those affected are protected from the sun and common eye problems.
Japhet José Simawonda from the Democratic Republic of Congo stands out in his country: With his fair skin and white-blond hair, the 33-year-old nurse is clearly different from the others. He is the child of black parents, but his skin is white. People like him lack the pigment melanin, which gives eyes, hair and skin their colour and protects them from the sun. The condition is almost always accompanied by impaired vision, sensitivity to the sun and the risk of skin cancer.
In some regions of Africa, people with albinism fear for their lives.
"People with albinism are still persecuted and marginalised in some regions of this world," explains CBM CEO Dr Rainer Brockhaus. "In our projects, we therefore work to better protect these people from violence. We provide education and we make sure they have equal opportunities, that they can go to school and get the medical help they need."
Often teased as a child
CBM/Tobias Pflanz
Because of the missing pigment, people with albinism need treatment for eye problems. However, in the Democratic Republic of Congo, there is a severe shortage of eye doctors. In the capital Kinshasa, CBM therefore sponsors a training centre where eye nurses are trained.
Japhet is one of 56 scholarship holders at present. The nurse is doing additional training, mainly because he wants to help people with albinism.
He knows their problems all too well from his own experience. He has a pronounced visual impairment. And on a bright, sunny day, he can barely make out outlines because the glare damages his eyes. To protect them, he wears special glasses. Japhet's skin is also very sensitive. During the day, he can usually only go outside in long-sleeved clothes and sunscreen.
Even as a child, he struggled not only with his sensitivity to the sun and his poor eyesight, but also with the ridicule of his peers. Japhet and his siblings were often teased. Six out of seven children in his family have albinism: "Some people took flight as soon as they saw us," Japhet recalls. "They thought we were bewitched," he recounts. His parents often cried. This is how he and his siblings grew up. A situation that frustrated him.
Today he is proud to be the way he is.
©CBM
In the meantime, things have changed. "Today, many have understood that everything that was said about us is a misconception," he says. "Because we are not bewitched, we are human beings who have a right to live like everyone else."
Today, Japhet has two children of his own. Both were born without albinism. His four-year-old daughter often asks him why he does not have black skin like her. "She thinks I wear white make-up," he says with a laugh. "Then I tell her that I am so light because I have albinism," he explains. "Because today I am proud to be who I am."
