The skin, hair and eyes of people with albinism are recently being celebrated, with the beautiful Thando Hopa and Refilwe Modiselle taking the modelling scene by storm locally and internationally.
Sadly stigma persists around the condition, and people with albinism have been shunned because of it. “This will only end when more people understand it,” says Nomasonto Mazibuko, founder and executive director of the Albinism Society of South Africa
Albinism affects people globally of all ethnic groups, she says. In South Africa, the incidence is estimated to be one in 3 900 black people, and one in 15 000 white people, with a total of around 11 500 affected people, according to available statistics.
This is an inherited disorder, and children are born with it only if both parents have albinism, or carry the gene for albinism, which they may do without knowing it – it’s common for parents and even grandparents to have normal skin colour. If neither parent has albinism, but both carry the defective gene, they have a one in four chance of their baby being born with albinism.
There’s no simple test to determine if you carry a defective gene for albinism, but if you already have a child with the condition, it’s possible to test for it in your next pregnancy with amniocentesis (drawing fluid from the womb around the foetus), or chorionic villous sampling (extracting cells from the placenta).
How albisims occurs
Albinism is the result of a defect in one of the many different genes that affect the production of the pigment melanin, which gives colour to skin, hair and eyes in people and all creatures and organisms. Depending on the type of genetic defect, it can result in a complete absence of melanin, producing white hair and very pale skin and eyes; or some melanin, producing yellow or light brown or reddish hair, and hazel or brown or reddish eyes.
Some forms of albinism affect only patches of skin, or only eye colouring. And a few rare syndromes can occur, with blood, lung, bowel, immune system and neurological disorders.
In general, however, people with albinism are as healthy and intellectually astute as anyone else in every way, except that their eyes and skin are far more sensitive, making them prone to vision problems and skin cancers.
Vision problems arise not only from lack of pigment, but by albinism changing the structure of the eye and optic nerve. This can result in crossed eyes, photophobia (light sensitivity), involuntary rapid eye movements (up and down, sideways or rotary, though the person doesn’t sense their eyes moving), astigmatism, impaired vision or blindness.
There is no treatment or cure for albinism, but much can be done to help prevent and relieve the problems arising from it.
Protect your eyes
To protect their eyes, people with albinism need to wear polarized sunglasses outdoors, preferably mirrored, says Mazibuko. Prescription spectacles can help correct vision problems, and permanent tints to these or photochromic lenses that darken in sunlight can be helpful. Abnormal eye movements (nystagmus) can often be corrected with surgery to the muscles of the eyes.
Protect your skin
To protect the skin, people with albinism should keep out of the sun, especially between 11am and 3pm, use sunscreen with an SPF factor of 20 to 30 (higher factors may have chemicals that irritate the skin), and wear wide-brimmed hats, shirts or dresses with long sleeves and high collars, and trousers or skirts that cover the legs, says Professor Michael Herbst, health specialist consultant at the Cancer Association of South Africa (CANSA).
But the biggest problem with albinism is still largely the stigma around it, which can lead to those with the condition being discriminated against, bullied and socially isolated. Counselling and a support group can help, but the best solution is to spread the word on the facts around albinism to help create understanding.
Find out more
To find out more about albinism or for support, contact the Albinism Society of SA on 011 838 6529, or the Genetic Alliance South Africa on 010 594 3844.
IMAGE CREDIT: Shutterstock
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