Chronicle Editor
Thandeka Moyo-Ndlovu, Senior Health reporter
STIGMA against Nobuhle’s* child did not begin when she went back home with a somewhat different baby but was immediately felt after she delivered at a local clinic.
Her child was healthy and big but nurses around her and fellow new mothers reduced her bundle of joy to a mere curse which did not deserve to be in the same ward with them.
A teacher by profession, she has had to battle name calling from colleagues and learners daily just to ensure that her son living with albinism has access to education.
Her second child, a daughter aged five, sometimes prefers to stay at home and not tag along to her workplace where she is doing ECD A just to avoid being ridiculed by other learners.
Her daughter being the only child living with albinism at the school has brought so much pain to the teacher who has since asked school authorities to raise awareness on the condition so that her daughter can have peace.
They are part of the 7 000 estimated Zimbabwean children living with albinism who have a 1 000-fold risk of developing skin cancer, compared to the general African population.
The lack of melanin — the dark skin colour pigment — in people living with albinism increases their risk of developing skin cancer which must be prevented by using skin care products. As a result, many die from skin cancer before the age of 40 in Zimbabwe.
Experts say children and adults with albinism in sub-Saharan Africa face multiple challenges which restrict their daily lives. These include visual impairments and extreme vulnerability to skin infections and cancer because they lack melanin in their skin.
Zimbabwe joins the rest of the world in marking the Albinism Awareness Month ahead of June 13, which is the International Albinism Awareness Day.
In an interview, Nobuhle said she longs for the day when her children will be able to access education without being labelled as curses or children of witches.
“I was afraid of going back home after delivering my first baby who is now 20 years old because he was the first albinism case we had in the family and at least not the first on his paternal side as that could have caused problems. The whole stigma started at the hospital, the nurses and mothers around me didn’t want to talk or come near my baby as if I had committed a sin by bringing him into the world,” she said.
“When it was time for school it was worse, I realised they tend to suffer more because of poor eye sight and the fact that teachers are not aware of their specific needs so that they perform well in their studies. Standard textbooks are printed in smaller fonts so, they do not have access to educational materials which accommodate them.”
Nobuhle said she had to take care of other learners who came to the school whose parents and guardians loathed albinos.
“There is this one girl who used to come without bathing to school as a Grade One and the family helper would say she cannot even touch her as she is albino. However, I managed to mentor and help her and the family to accept the situation, having gone through the same situation myself.”
She added that she also struggled monthly to buy sun screens for her two children as that costs a minimum of US$40.
“As a teacher I cannot afford that, we need the Government to chip in and provide these creams plus glasses for our affected children. We also need changes in policies so that at school they are accommodated like other children.”
In an interview Mr Willard Musiyarira, the director of Noble Hands Zimbabwe Trust said the organisation has launched a five-year project to address challenges faced by Zimbabweans living with albinism.
“Zimbabwe has an approximate population of +/-7 000 people with albinism, of whom at least 70 percent live in the rural areas and close to 90 percent are not employed. Having noticed the challenges that people with albinism (PWA) in Zimbabwe face, which range from social exclusion, discrimination, segregation, health challenges, cultural myths and beliefs, economic hardships prevailing in Zimbabwe, unemployment and lately impact of Covid-19, as a Trust we came up with a programme dubbed the Albinism Konnect Program 2021-2025,” he said.
“People with albinism face vision challenges due to lack of melanin in their eyes, children are most affected especially when they go to school from ECD because they won’t be having much understanding of the condition. It is within that period that necessary aids to education for pupils with albinism are supposed to be introduced so that they are cushioned from the vision impairment impacts thereby creating a good educational foundation for the child.”
He said a case study done in 2021 showed that 98 percent of pupils with albinism in school require visual aids to education which comprise reading spectacles/lenses, large font text books and examination papers.
“We discovered that they also need writing books with large spaces and boxes, good classroom environment where the child is placed near the black board to improve visibility, use of black boards and blue or yellow chalks when writing on the black board and in extreme situations extension of examination time during examinations as it takes 5 times more effort for a child with albinism as compared to a child with melanin to read text,” said Mr Musiyarira.
He said in partnership with OSISA, the organisation has provided large font text books targeting 60 pupils with albinism in Grade 3, 4 and 5 on the core subjects that are Mathematics, Science and English which were printed at College Press.
“Our initial target was to assist 100 beneficiaries but given the cost of printing the books of on average US$50,00 a book we were forced to print for a limited number within our capacity.
“The books have already started being distributed. We have completed the distribution for Bulawayo, Matabeleland North and South where 15 children benefited. In the coming weeks, we will be distributing in the remaining provinces across Zimbabwe,” he added.–@thamamoe
Online Reporter