As a little boy born in Uganda, Peter Ogik was told: Things like you don’t die, they just disappear.
Every day, he waited to fade away. “Whenever I fell sick, I asked my brother to keep a close watch on me so I wouldn’t vanish,” Ogik, now 30, remembers. As the first person with albinism to be born in his village, he didn’t know anyone like himself, and believed everything he heard. His schoolmates would pinch him to see if he was really human, while teachers would ignore the special accommodations his albinism required: for example, like sitting him closer to the board so he could see the assignments, despite his poor vision.
It wasn’t until Ogik was 10 that a church pastor told him there was nothing wrong with the color of his skin. But by then, the stigma surrounding albinism had done enough damage. So when he grew up, Ogik co-founded an organization for people like him: SNUPA, or the Source of the Nile Union of Persons with Albinism.
Based within half a mile of the source of river Nile in Jinja, from where the organization draws its name, SNUPA has supported its 1,000 plus members with albinism in Uganda since September 2013 with critical health care, livelihoods and by changing perceptions around them.
In sub-Saharan Africa, it is estimated there is one person with albinism for every 2000 to 5000 people. The lack of the pigment melanin in the skin of people with albinism makes them susceptible to skin cancer. Without the protection of melanin from the strong equatorial sun, nine out of ten people with albinism in Africa die due to skin cancer before turning 40.
SNUPA strives to prevent that. Monthly cancer screening is conducted in six districts. Every quarter, a cancer clinic is arranged in Jinja where a dermatologist checks all attendees and clears their skin of any pre-cancerous lesions using cryosurgery. Anyone with a developed cancer is referred and funded for further treatment.
Justine Naigaga, a 35-year-old woman living in a village on the outskirts of Jinja, is one of the 80 plus SNUPA members to have received skin cancer treatment. Multiple surgeries around the left eye, neck and chest over a period of two years have given her “clear and pain-free skin, and a lot of self-confidence,” Naigaga says. A regular supply of long-sleeved shirts, wide-brimmed hats, lip-salve and sunscreen from SNUPA supports underprivileged men and women with albinism like Naigaga to keep themselves protected from the sun. In addition, the support and funding that SNUPA can provide have allowed people like Naigaga to open small businesses, which pays dividends larger than just the ability to earn a living. “I feel accepted [by the community] when people come and buy goods from my store,” Naigaga says.
According to Ogik, equally big foes are the deep-rooted stigma and the myths associated with albinism in the African continent. It is particularly tough for women and children, who are sometimes kidnapped and killed for their body parts, which are assumed to bring good luck and wealth to those who acquire them. Women with albinism are also often raped, because of pervasive rumors that doing so can cure men of HIV. “People are even known to dig graves and steal corpses for their body parts,” says Ogik.
To educate people with albinism about their condition and rights, SNUPA puts the word out through radio talk shows, phone calls, and local leaders, looking to get any touch with any person with albinism who might need the organization’s health. When they find a likely member, SNUPA volunteers travel to their homes, and share their experiences.
Ogik often makes these visits himself. “I’ll say: ‘Hey, I’m Peter and I work with an organization called SNUPA which was created for me and for you so that we know our rights and can live a happy life.'”
Educating everyday Ugandans—especially children—is also a big part of SNUPA’s mission. Ogik regularly goes to schools and teaches kids that far from being a ‘ghost’ or a person ‘cursed’ with a mysterious disease (as many of them believe), people with albinism are just the same as they are. “The only difference between you and me is the amount of melanin in our skin,” he explains.