Thando Hopa is a South African model, lawyer, poet – and she has albinism Book SUITE. But she doesn’t let the condition define her. Instead, she lives a normal healthy life.
Her condition is caused by an absence of melanin in the body. Melanin is a pigment that gives hair, skin and eyes their colour. Without melanin, skin and hair are white and vision is impaired…
Discrimination against people with albinism
Africa has the world’s highest number of people with albinism – about one in every four thousand per country. While Thando has become successful and accepted, many people with albinism face stigma and social isolation; they’re often called “white monkeys”, and in Tanzania, “ghosts”.
They are constantly discriminated against, and even banished from their communities or killed at birth. There are also many myths about their bodies. Particularly in Africa, many people believe that having sex with a person living with albinism cures HIV and AIDS. In other parts of the continent, people believe that the body parts of people with albinism bring riches or sexual power.
It’s easy to spot someone with albinism, however, the person still has the features of the race of his or her ethnicity. This means they live in two worlds; the race or ethnicity they were born into, and the white skin they were born with.
People with albinism must not only prove their race or ethnicity, but they must also manage the practicalities of the condition, and try to live “normal lives” in the face of stigma.
People with albinism have reported feeling “cursed” as their condition is constantly mocked. This causes feelings of social anxiety, depression and a poor self-image. As a result, they often keep to themselves, having no friends or family support.
Supporting your friend with albinism
Having a friend with albinism is like having any other friend. But there are few things you can do to help make life with albinism easier for them.
- First, ask how they would like to be referred to; albino has been used as an insult, so many people prefer “people with albinism”.
- Recognise that albinism is an inherited condition and not a curse. Help break the stereotype and stigma around it.
- Recognise that albinism does not cause mental difficulties. People with albinism can keep up with their peers in class.
- Understand the different kinds of albinism.
- Be aware that people with albinism might have vision problems, so your friend might be staring oddly at you just to see you clearly.
- Be aware of the sun safety precautions people with albinism must take to stay healthy.
People with albinism suffer from light and skin sensitivity from the damaging rays of the sun. Without melanin, which offers some protection against UV rays, their skin is more vulnerable to skin cancer:
- Wear long-sleeved cotton shirts and long trousers, and tops with high collars.
- Wear closed shoes when out in the sun.
- Keep out of the sun especially between 11 am and 1 pm.
- Use a sunblock of at least SPF25 on all exposed areas of skin (neck, hands, and feet if wearing sandals).
- Use a lip protection cream of at least SPF25.
- Wear wide-brimmed hats.
Besides friends, family and counsellors, there are support systems for those living with albinism. Genetic Alliance South Africa works with people with inherited conditions to provide support and information.
You can contact Nomasonto Mazibuko at Genetic Alliance for more information on [email protected] or call (011) 838 6529.