Love a child with albinism in abundance and build their self-esteem and confidence because a cruel and judgemental society filled with stigmatisation awaits them.
This is the message of Margaret Stevens, the mother of Megan Stevens, a proud albino.
During September, which is Albinism Awareness Month, she wants to raise awareness about the stigma suffered by those with this rare genetic condition.
Stevens is the Motor Industry Staff Association’s (Misa) Woman of the Year for 2021 and a receptionist in Bloemfontein.
- Albinism is caused by mutations, or changes, of certain genes that affect the amount of melanin a body produces. Melanin controls the pigmentation (colour) of the skin, eyes and hair.
- People with albinism have extremely pale skin, eyes and hair. They are at an increased risk of vision, skin, and social issues.
- According to the United Nations (UN), 98% of people with albinism in Africa do not live beyond 40 years because of sun exposure, with skin cancers responsible for at least 80% of deaths.
Stevens says at birth the nurses assisting her thought Megan needed oxygen because she was so pale.
“She was the most beautiful baby, but people talked behind my back, wondering if her father was a white man. I did not think much of it at the time, but soon realised that my marriage was not the same.
“Megan’s father never said anything, but our marriage deteriorated and before she was three years old, he left home and avoided contact with us.”
Stevens is not the only woman who experienced this.
She was asked to talk to another husband of a woman who gave birth to a baby with albinism. This husband gave his wife an ultimatum to choose between him and the baby.
“This couple’s marriage also ended in divorce. The mother was shy and used to lock her baby in the car, too afraid of being seen with the child.
“In some communities the stigma is even worse because albinism is linked to witchery.”
According to a UN study, more than 200 albinos have been murdered in Africa over the past decade, driven by the myth of witchery.
Stevens witnessed many albinos who neglected their health by not covering themselves with sunblock and not avoiding the sun.
“I protected Megan to the best of my ability. She never disappointed me and today I am very proud of her and her achievements.”
- Visit the Albinism Society of South Africa on Facebook for more information.
