But for many people living with albinism this information comes too late. This is the case with 50 year-old Veronica Ngqono of rural Cofimvaba, in the Eastern Cape Province.
‘I did not know that my type of skin could put me at risk of having skin cancer. I used to bask in the sun without any care. Even my parents were not informed about the dangers of my exposure to the sun’, she says.
‘The sun has scarred me so much. It has damaged my face, legs and other parts that are exposed. Certain parts of my face have been cut and stitched-up’, she continues, with sadness in her tone.
Veronica tells me she was not aware that something was wrong even when she first noticed spots on her skin.
‘I saw spots on my face and did not take them seriously. But, in 1990 I developed sores on these spots and then went to consult a doctor. The doctor told me I had skin cancer’, she says.
Seventy-year old Maria Xaba from Soweto also lives with albinism and is recovering from what appears to be an aggressive form of skin cancer just below her left knee.
‘I had huge holes that were infested with lots of wriggling maggots. It was painful!’, she says with a loud boisterous voice.
During their early years, Veronica Ngqono and Maria Xaba had no access to information that could help them care for their skin. But things seem to have changed for the younger generation.
The Albinism Society of South Africa (Albinism SA) was set up to address the interests of people living with albinism. Part of its role is to inform communities and to create awareness about this hereditary condition.
‘At times you find that your special needs as a person living with albinism are not met due to lack of knowledge. We (Albinism SA) give information and support. Some people blame witchcraft for their albinism. It’s not witchcraft!
As people living with Albinism, indeed we are at high risk of developing skin cancer’, says Nomasonto Mazibuko, Founder and Chairperson of Albinism SA.
Explaining why people with this condition are prone to sunburn and skin cancer, Medical Scientist at the Department of Human Genetics at the University of the Witwatersrand, Dr Robyn Kerr, said that:
‘Because of the lack of melanin, which acts as a physical protective barrier to sunlight, that light penetrates into the deeper layers of their skin causing damage to their cells’.
To protect against the harsh rays of the sun people with albinism are advised to apply sunscreen of a higher sun protection factor (SPF) number. Higher SPF numbers indicate more strength of protection against the sun.
However, people like Veronica who rely on state hospitals for the provision of their sunscreen, find it difficult to get a sunscreen with the appropriate SPF number.
Albinism can affect all races, but scientists believe some races have a much higher prevalence than others. Black people are more likely to have albinism, says Dr Kerr.
‘We estimate that Albinism in our black population occurs with a prevalence of approximately one in 4 000 individuals’, she says.
Albinism is a genetic condition which results in the inability to produce melanin, which in turn provides pigmentation for colouration of the skin, hair and eyes.