Albinos demand special care clinic

Spokesperson of the Albinism Society of Botswana (ASB), Tlhalefo Kanjabanga has stressed the need to teach about albinism to combat violence and discrimination against albinos. The 18-year old who joined the organisation to “educate and enhance the self-esteem of people with albinism,” said she grew up being discriminated against because of her condition.

“There is still prejudice at most levels in Botswana,” she said, adding that the health ministry does not even have health care providers specialising in albinism. “This means people with the condition do not always get the correct medical care or at least extra precautions being taken when prescribing medication to them due to their sensitive skin.” Albinism is a genetically inherited condition that develops when both parents have copies of an abnormal gene. The results are that from birth the body does not generate melanin to darken the skin.

The lack of this pigment results in the person having very pale skin, white or sand-coloured hair, and light brown or blue eyes. People with albinism may also have impaired vision, be sensitive to bright light, squint, nearsighted and sometimes involuntarily roll their eyeballs from side to side. The risk, for example, of people with albinism developing skin cancer is 1000 times higher compared with the general population.

“These are significant health problems that require lifelong management,” said Kanjabanga. According to the World Health organisation (WHO), the worldwide prevalence is about one in 17 000 people, but in parts of sub-Saharan Africa, where it is more common, the ratio is one in 1000. The heavy caseload is due to a high number of people carrying the albinism genes.

There is no treatment or cure for albinism yet no country in the world has developed a health care policy to assist albinos. Such a policy, Kanjabanga explained, would be an important national step towards providing the support and care needed by people with albinism. However, she said it should start with government recognising people with albinism as people living with disability and aligning the current Botswana Disability Policy with the UN-Convention on the Rights of People with Disability.

“Policy-supported efforts should include health care support for eye and skin care. And information as well as educational material need to reach people who suffer from albinism and their families, health care providers and educators,” Kanjabanga said. International Albinism awareness day is commemorated every year on 13 June. The theme this year was ‘diversifying and advocating for human rights for people with albinism’.