Albinism Awareness Month: A need for more education including how condition is inherited from both parents

September is Albinism Awareness Month and the Department of Health provides more information on albinism in an effort to raise awareness about the condition throughout the month.

While South Africa commemorates albinism awareness throughout the month of September, the United Nations (UN) this year marked a decade since it launched International Albinism Awareness Day on 13 June.

Themed 10 years of IAAD: A decade of collective progress, the UN encouraged the global community to celebrate the strides made within the movement, with renewed commitment for the future and to reflect on the continued legal, policy and practical changes still required to ensure the full and equal enjoyment of rights by persons with albinism.

The need for education and awareness surrounding albinism remains important, particularly on the African continent where ostracization still takes place, stemming from uninformed societal stereotypes.

According to the 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.

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Genes and parental dynamics

Albinism is a genetic condition inherited from both parents that occurs worldwide, regardless of ethnicity or gender.

The aforementioned definition, which clearly states that the genetic condition is inherited from both parents, is significant one as many families have been broken down due to lack of accurate information.

South African Margaret Stevens, who is the mother of Megan Stevens, a daughter living with albinism, is on a mission to bring awareness about the stigmas around the genetic condition after her husband left home following the birth of their daughter.

“Megan’s father never said anything, but our marriage deteriorated and before she was three, he left home and avoided contact with us,” said Stevens.

Margaret was 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 the black communities, the stigma was even worse because albinism is linked to witchery,” Stevens said.

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