Namibians get to grips with albinism

THIS week is Albinism Week, with October 21 being Namibian Albinism Day.

In 2002 SINASRA (Support in Namibia of Albinism Sufferers Requiring Assistance) was founded by Stuart Super and some members of the Rotary Club. Super is an optometrist who has since 1992 examined some 320 Namibians with albinism.There are some 780 albinos in Namibia, making the incidence of albinism in this country one of the highest if not the highest in the world.If our population is 2 million, then the incidence is one in 2 500 people or 1:2 500.The ratio of albinos in South Africa is 1:3 800, Nigeria 1:5 000 and amongst Afro-Americans 1:22 000.In Holland it is 1:11 000 and in Norway 1:22 000.Albinism occurs in all races but predominantly in black people and more so in Africa.A geneticist has postulated that the reason for albinism being more common in black people than in whites is probably due to the melanin gene, which causes the skin to darken, being more predominant and active in blacks than whites.Resultantly there is a greater chance for something to go wrong and a mutant gene to form.This mutant gene might well be the cause of a lack of melanin and results in a melanin-deficient albino with characteristic light hair and almost white skin.Of the 320 albinos that Super has examined, not one was of white parentage.With only a few exceptions, albinos in Namibia are poverty stricken and cannot afford the care needed to protect themselves against over-exposure to the sun and the resultant cancerous lesions which appear on their skin.Non-albinos often believe these sores are contagious and hence shun albinos.The result is the psychological trauma of a loss of friendship, the disability of having low vision and the knowledge that the skin cancer is life threatening.Shunned by society, unable to cope at school, unable to find employment, albinos’ lives become thoroughly miserable.All the albinos who were examined by Super have low vision and about half of them were classified as blind.Corrected vision with conventional spectacles is seldom better than 6/18 which is not good enough for a driver’s licence.But with 2,1x or 2,5x magnifying telescopic spectacles, vision as good as 6/9 has been recorded, although it is not possible to drive with them.Most of those examined indicated that telescopic magnifying spectacles profoundly improved their distance and near vision.In Namibia these special telescopic spectacles have substantially improved the vision of those with albinism to the extent that sufferers can cope with classroom situations and near work can be managed at a practical distance of 25 cm, which makes writing and reading manageable.The result is that lengthy examinations can be written and the educational potential of those with albinism is now attainable.Some 200 telescopic spectacles are presently available at Windhoek Central Hospital to those with albinism following an eye examination.Due to its relatively rare prevalence, albinism is a manageable condition.If precautions against skin cancer are taken, the lifespan of those with albinism can be prolonged and their quality of life improved.All people with albinism need to protect themselves against the radiation of the sun.In Africa many live in abject poverty, cannot care properly for themselves and resultantly are prone to skin cancer.Sunburn invariably causes skin cancer, which results not only in early death but in marginalisation and discrimination.The Ministry of Health and Social Services has made sun block-out cream available free of charge to people with albinism.This cream should be available to all albinos at State hospitals and State clinics throughout the country.It is also of vital importance that albinos wear a hat at all times and whenever possible long-sleeved shirts and long trousers to protect themselves against the sun.SINASRA offers free medical and optometric examinations to albinos and people can contact them at (061) 203 3223 or 22 5637Super is an optometrist who has since 1992 examined some 320 Namibians with albinism.There are some 780 albinos in Namibia, making the incidence of albinism in this country one of the highest if not the highest in the world.If our population is 2 million, then the incidence is one in 2 500 people or 1:2 500.The ratio of albinos in South Africa is 1:3 800, Nigeria 1:5 000 and amongst Afro-Americans 1:22 000.In Holland it is 1:11 000 and in Norway 1:22 000.Albinism occurs in all races but predominantly in black people and more so in Africa.A geneticist has postulated that the reason for albinism being more common in black people than in whites is probably due to the melanin gene, which causes the skin to darken, being more predominant and active in blacks than whites.Resultantly there is a greater chance for something to go wrong and a mutant gene to form.This mutant gene might well be the cause of a lack of melanin and results in a melanin-deficient albino with characteristic light hair and almost white skin.Of the 320 albinos that Super has examined, not one was of white parentage.With only a few exceptions, albinos in Namibia are poverty stricken and cannot afford the care needed to protect themselves against over-exposure to the sun and the resultant cancerous lesions which appear on their skin.Non-albinos often believe these sores are contagious and hence shun albinos.The result is the psychological trauma of a loss of friendship, the disability of having low vision and the knowledge that the skin cancer is life threatening.Shunned by society, unable to cope at school, unable to find employment, albinos’ lives become thoroughly miserable.All the albinos who were examined by Super have low vision and about half of them were classified as blind.Corrected vision with conventional spectacles is seldom better than 6/18 which is not good enough for a driver’s licence.But with 2,1x or 2,5x magnifying telescopic spectacles, vision as good as 6/9 has been recorded, although it is not possible to drive with them.Most of those examined indicated that telescopic magnifying spectacles profoundly improved their distance and near vision.In Namibia these special telescopic spectacles have substantially improved the vision of those with albinism to the extent that sufferers can cope with classroom situations and near work can be managed at a practical distance of 25 cm, which makes writing and reading manageable.The result is that lengthy examinations can be written and the educational potential of those with albinism is now attainable.Some 200 telescopic spectacles are presently available at Windhoek Central Hospital to those with albinism following an eye examination.Due to its relatively rare prevalence, albinism is a manageable condition.If precautions against skin cancer are taken, the lifespan of those with albinism can be prolonged and their quality of life improved.All people with albinism need to protect themselves against the radiation of the sun.In Africa many live in abject poverty, cannot care properly for themselves and resultantly are prone to skin cancer.Sunburn invariably causes skin cancer, which results not only in early death but in marginalisation and discrimination.The Ministry of Health and Social Services has made sun block-out cream available free of charge to people with albinism.This cream should be available to all albinos at State hospitals and State clinics throughout the country.It is also of vital importance that albinos wear a hat at all times and whenever possible long-sleeved shirts and long trousers to protect themselves against the sun.SINASRA offers free medical and optometric examinations to albinos and people can contact them at (061) 203 3223 or 22 5637