An abundance of love and care is called for during current Albinism Awareness month
With the lifespan of people with albinism already under threat from nature, disease and the elements, an abundance of love and care is what is needed to ease life’s harshness towards them.
This is the message being spread far and wide during this month’s Albinism Awareness Month, to encourage parents, caregivers and the general public to remove the stigma long attached to people living with the condition and to accept them for who they are.
Said one mother: “Love a child with albinism in abundance and build their self-esteem and confidence, because a cruel and judgmental society filled with stigmatisation awaits them.”
Margaret Stevens, the mother of Megan Stevens, said she wanted to raise awareness about the stigma suffered by those with this rare genetic condition.
Said the proud mother about the birth of her child: “At birth, nurses thought Megan needed oxygen because she was so pale.”
But, despite being the most beautiful baby, people talked behind her back, wondering if her father was a white man. This did not only affect her and her daughter on the social front, but her marriage also suffered. “I soon realised that my marriage was not the same.
“Megan’s father never said anything, but our marriage deteriorated and before she was three, he left home and avoided contact with us.”
She went on to extend her help in saving both the mental and domestic state of homes with her own experience, going out on a limb to intervene in situations where relationships were breaking up due to the birth of a child with albinism.
And, she has not stopped, she said.
Albinism is caused by mutations, or changes, of certain genes that affect the amount of melanin of the body produces. Melanin controls the pigmentation, or the colour of the skin, eyes and hair.
As such, people with albinism have extremely pale skin, eyes and hair, and they are at an increased risk of vision, skin and social issues.
Weighing in on the condition, the UN said 98% of people with albinism in Africa did not live beyond 40 because of sun exposure, with skin cancers responsible for at least 80% of deaths.
The World Health Organisation (WHO) says Albinism occurs in all racial and ethnic groups across the world, but the proportion of people affected by albinism in a given population varies by region. “In Africa, the prevalence of albinism generally ranges from 1 person in 5 000 to as low as 1 person in 15 000,” the world health body said.
They added that exposure of people with albinism to the sun without sun protection remained a cause of premature death from skin cancer, in addition to causing high morbidity and a drop in the quality of life due to premature skin photoaging –multiple skin lesions and large anaesthetic scars following malignant skin lesions surgical excision.
“People with albinism in Africa are reportedly 1 000 times more likely to develop squamous cell carcinoma (SCC) than the general population,” the WHO said, adding that persons with albinism predominantly developed skin cancers by the time they were 20, and therefore did not commonly live beyond the age of 30 years.
When they, in 2021, recommended that people living with albinism deserved better health care from sub-Saharan governments due to the hot sun, they said: “Providing access to sunscreen for persons with albinism aligns with the UN Sustainable Development Goal of good health and well-being.”
They called attention to the “leave no one behind” principle of the UN goal and the fact that sunscreen was absent from many countries’ essential medications list.
The WHO said in one Brazil city, a law existed for the provision of the distribution of sunscreen free of charge to persons with albinism. Also, at a national level in Brazil, a bill exists that persons with albinism have the right to access dermatological care, including sunscreen and essential medicines.
Organisations and governments have been trying to make people understand that except for vision problems, most people with albinism were just as healthy as anyone else, but in South Africa the stigma remained strong in portions of the country.
Women are often blamed for giving birth to a child with albinism. They can be accused of being unfaithful or of bringing a curse to the family, and as a result they face rejection from husbands and families, and can be abandoned by their communities.
“The worst expression of discrimination against persons with albinism is their dehumanisation, which lays the foundation for horrifying physical attacks against them,” said the organisation People with Albinism: not ghosts but human beings.
“Because some believe that they are magical beings or ghosts, they mutilate or even kill them so their body parts can be used for witchcraft rituals.”
They are often denied the chance to go to school, get a job, have a family, and they face discrimination for their entire lives, simply because of their appearance, the organisation said.
Said one Pretoria non-governmental organisation, the social attitudes toward albinism were similar to those experienced by other disabilities and minority groups, founded on a lack of understanding, the fear of the unknown, and prejudice based on appearance.
“The forms of stigma and discrimination they face is based on their physical appearance and is often the object of erroneous beliefs and myths influenced by superstition,” social worker Mpumzi Sewela said. This, Sewela said, fostered marginalisation and social exclusion.
But, she said, awareness over the years had made a small dent in their acceptance. “We see them in high offices, positions of influence, we watch them on TV, they are on social media. Some communities have learnt the basics of caring for them, so in schools they do present as different but taken care of’ This has brought with it an acceptance, that they are no different,” Sewela said.
Traditional healers bodies have also taken it upon themselves to educate each other and clients, that they possess no special powers. “We teach they they should therefore not be hunted, kidnapped, sacrificed and mutilated,” another doctor said.
She added that there still remained, however, pockets of traditional health practitioners who continued to prescribe that their body parts provided potent aspects of potions.
And as the South African government continues to raise awareness on albinism, they said, ahead of this month, acceptance was important, as was the protection of their sensitive eyes and skin, that they had to be kept out of the sun, especially between 11am and 1pm, and the use of a sun barrier cream on sun exposed areas should be kept in mind.
“Lip protection cream, the use of large brimmed hats, long sleeved cotton shirts and blouses with high collars, and dressing children in long trousers and slacks whenever possible, to protect the legs, should be taught to parents,” the Health Department said.
Sunday Independent
ntando.makhubu@inl.co.za