Dealing with albinism

CAMPAIGN: Rapson Rambuwani, Nomasonto Mazibuko and Sanele Mtshazo are seen at the launch of the essay competition in Limpopo recently. PIC: ELIJAR MUSHIANA. Circa July 2009. © Sowetan.
CAMPAIGN: Rapson Rambuwani, Nomasonto Mazibuko and Sanele Mtshazo are seen at the launch of the essay competition in Limpopo recently. PIC: ELIJAR MUSHIANA. Circa July 2009. © Sowetan.

THE parents of children born with albinism suffer a lot of self-doubt, regret and anguish caused mostly by the social stigma attached to this manageable inherited condition.

THE parents of children born with albinism suffer a lot of self-doubt, regret and anguish caused mostly by the social stigma attached to this manageable inherited condition.

They also tend to live in fear for the safety of their children and the security of entire families in communities where there is a gross misunderstanding of albinism.

Worst of all this happens where people with albinism are persecuted or superstition is so rife that affected people, especially children, are hunted for body parts to be used in rituals.

'Defective skin'

Simply put, albinism is a lack of normal skin pigmentation, or the skin's inability to produce melanin or the normal colouring of the skin, hair and eyes.

This is caused by defects in the hereditary material that determines skin colour.

Granted, people who have normal pigmentation could be carriers of the hereditary material that is defective for skin colour, and a carrier mother and father can pass their defective skin colour information on to their children, who could then have albinism.

School challenge

School poses a challenge for pupils with albinism but with loving, caring and compassionate teachers, affected children adapt quickly and prosper, especially when fellow charges are welcoming and cooperative.

Conducive learning and teaching conditions involve suitable changes in books, games and equipment, furniture and special needs such as large print, special reading aids, orientation and mobility training.

EYESIGHT

In the early months of the baby's life, visual responses are usually quite poor.

From about four months of age, an infant with albinism will start to use vision. Infants with albinism can, however, learn to use their vision effectively.

Effects on an affected child's vision include:

  • An abnormality in the retina, called macular hypoplasia, resulting in decreased clarity of vision;
  • A rhythmical involuntary flicker of the eyes, called nystagmus;
  • An intolerance to bright light due to reduced or absent pigment in the iris, called photophobia;
  • Refractive errors, or short or long sight or astigmatism;
  • Strabismus, or "squint" or "turned eye"; or
  • Problems with depth perception.

To quash the vicious rumours, misplaced superstitions and tragic stigma that dog albinism, Sowetan's corporate social investment and responsibility campaign is working with the Albinism Society of Southern Africa.

We are also looking for sponsors. Pupils in Grade 10, 11 and 12 are challenged to test their research skills by writing essays of not more than 1000 words on:

"Albinism: being different in my community";

"Albinism: experiences of a teenager with albinism";

"Albinism: how I relate to people with albinism"; or

"Albinism: a disability or not?"

Neatly written or typed entries should be sent to: National Schools Essay Competition of Albinism, PO Box 9881, Johannesburg 2001.

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