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September is Albinism Awareness Month

 

International Albinism Awareness Day (IAAD) is commemorated annually on the 13th June and in South Africa Albinism Awareness month is observed in September. During the month we must promote education about albinism and create greater awareness of the challenges faced by those with albinism. Persona Doll Training promotes education about albinism through its training programmes.

The term ‘person with albinism’ is more acceptable than ‘albino’. ‘Albino’ can feel like a dehumanising label. Name-calling is a very serious issue for people with albinism: names include ‘Zeru-Zeru’, ‘ghost’, ‘whitey’ or ‘four eyes’. The usual name in Xhosa is inkawu which means ape.

‘Albinism’ refers to a group of inherited conditions. People with albinism have little or no colour pigment (called melanin) in their eyes, skin, or hair and problems with their eyesight because of abnormal development of the retina and patterns of nerve connections between the eye and the brain.

In South Africa about one in every 4 000 people is born with albinism.

Albinism affects people of all races. People with albinism often have very light-coloured hair, pale skin and light-blue eyes. Their skin is very sensitive to the sun, and they need to wear special sunscreen lotions, hats and sun-protective clothing and have regular check-ups at skin and eye clinics.

Many people with albinism cannot focus if they look you straight in the face – they need to use their peripheral (side) vision to see you so they often squint or look at you skew. This can give the impression of being shifty and untrustworthy or shy and unconfident but it’s a physical problem, nothing to do with character and personality.

Wearing prescription sunglasses, spectacles and using magnifying glasses can help those who are partially sighted or have poor vision.

There are still many negative ideas and myths about this genetic condition, particularly in sub-Saharan Africa. This causes stigma and discrimination.

Many people believe people with albinism have magical powers. Brutal killings for body parts for potions and charms have been reported in South Africa, Tanzania, Kenya, Burundi and Congo.