Let’s fight stigma against albinism

15 May, 2018 - 00:05 0 Views
Let’s fight stigma against albinism National Disability Board chairperson Mrs Mercy Maunganidze Chimanga.

The Chronicle

National Disability Board chairperson Mrs Mercy Maunganidze Chimanga.

National Disability Board chairperson Mrs Mercy Maunganidze Chimanga.

Micah Zinduru recently in BINGA, Features Correspondent
Located in the far north-west of Zimbabwe along the Zambezi escarpment, Binga could pass as one swathe of land to have been condemned by both geography and geomorphology.

Both flora and fauna are subjected to day after day of cloudless skies, scorching heat and unrelenting sun.

In some years it never rains a drop for months on end. The sun is always angry, the people, vegetation and wild animals alike are used to this harsh reality but they soldier on.

The harsh conditions and unrelenting weather patterns in Binga, home to the BaTonga tribe, becomes even harsher and cruel for people living with albinism.

A people so traditional and too mystic, it is rather a curse to live with albinism in Binga as such people have to bear with both society rejections on one side and unforgiving climatic conditions on the other.

“It’s a double curse to live with albinism in Binga. In our Tonga  culture, if you are born with albinism, they say it’s a curse and no one wants to associate with you”.

“With a sensitive skin, the hot weather patterns in Binga becomes even a hell of a life to live in Binga,” said Ms Chipo Siakabwa.

Siakabwa, was born with albinism and due to lack of resources to protect her skin and eyes, she is nearly completely blind.

A mother of five with different fathers, Ms Siakabwa said most of the people who impregnated her were doing so not out of love but to some beliefs.

“Some of the people who approach us will not be proposing us out of real love. Some would have gone to traditional healers and told to get intimate with people with albinism like me so as to heal or exorcise them,” she said.

Mrs Memory Munyoro who has two children who were born with albinism said she had a torrid time raising the kids as they were subjected to all sorts insults and name calling. “During school days, teachers would not allow my kids who were born with albinism, to sit in front of the class. They were made to stay at the back of the class,” she said.

Recently, platinum giant, Zimplats took its campaign, ‘Beyond the Skin’ to Binga. The campaign’s key objectives are to educate people on what albinism is and address issues of stigma and discrimination as well as drive acceptance of the integration of people with albinism in all spheres of life.

The campaign also seeks to facilitate annual distribution of sun protection materials, some of which are not easily accessible.

People with albinism in Binga expressed gratitude to Zimplats and its partners for bringing the campaign to their community, saying the move would bring the positive picture.

Binga District Administrator, Ms Linda Banda Ndethi, said the community needed to accept those with albinism as they were normal human beings.

“We are grateful to Zimplats for bringing their campaign to Binga. The campaign has seen some people with albinism receiving some sunscreen lotions, lip balm and getting eye examinations. Some also received spectacles after the eye examinations.

“Sometimes children fail to get to school because of the excessive heat that we sometimes experience in Binga”, added Ms Banda Ndethi.

Albinism is a rare group of genetic disorders that causes the skin, hair, or eyes to have little or no colour. Albinism is also associated with vision problems.

In so may African countries, people with albinism are misunderstood and mistreated because of their skin colour. It is caused by a defect in one of several genes that produce or distribute melanin.

The defect may result in the absence of melanin production, or a reduced amount of melanin production. The defective gene passes down from both parents to the child.

People with albinism are uniquely susceptible to sunburn, and at elevated risk of developing skin cancers related to chronic sun exposure. Lifetime exposure to ultraviolet radiation is the single greatest risk factor for developing skin cancer. Periods of high exposure or instances of extreme sunburn, especially in childhood, can precipitate the emergence of skin cancer later in life.

If the disease does develop, early detection and intervention are critical. In many cases people with albinism develop pre-cancerous patches (actinic keratoses) that can be removed with liquid nitrogen cryotherapy before cancer occurs.

Zimplats head of Corporate Affairs Busi Chindove urged other organisations to partner them in conscientising people about albinism and make a difference.

“We need to join hands and fight this stigma so that everyone has an appreciation of albinism”, she said.

National Disability Board chairperson, Mrs Mercy Maunganidze Chimanga who is also the national director for Zimbabwe Albino Association says Zimbabwe still has a lot to do in order to eradicate stigma against people living with albinism.

She says the majority of people still believe albinism was contagious and were not comfortable with mixing with such people.

“We still have [a lot of] work to do in educating people that there was nothing amiss with someone living with albinism. It’s just a condition and not contagious as some would want to believe,” she said.

Mrs Chimanga who lives with albinism herself says she does not quickly offer a hand-shake when greeting people unless the other party offers. “For me to extend a handshake when greeting someone, I always wait for that person to offer her hand because I don’t want to cross the boundary. Some people arrogantly believe albinism is contagious,” she said.

An optometrist, Dr Zolisa Jompolo of Optinova, a partner in the campaign, took time to explain the visual challenges faced by people with albinism.

Dr Jompolo spoke of the need for a holistic approach which includes dealing with the home environment, the school environment as well as the working environment.

“People with albinism are normally short sighted and have what is called astigmatism more enhanced by entry of light in the front of the eye. Light does not enter properly in the eye. They eye twitching or eyeball spasm is referred to as nystagmus. Such a condition causes sudden eyeball movements, ” said Dr Jompolo.

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