This year marks the first ever celebration of International Albinism Awareness Day in world history. June 11th has been marked as the day to celebrate the culture of Albinism and bring the world to understand the medical condition. Although Albinism has been around for a very long time, it has not received much advocacy globally.
This day aims to educate society about Albinism and correct some myths and misconceptions that society believes about the condition.
The decision to officially mark June 11th as International Albinism Awareness Day came about after the UN Human Rights Council in Geneva made a recommendation to the General Assembly in June last year that such a day should proclaimed.
Nomasonto Mazibuko, a commissioner for gender equality at the Albinism Society of South Africa says people with Albinism experience discrimination, stigma and attacks from society on a daily basis. According to her, part of the day is about highlighting the importance of educating society at large about the condition.
Mazibuko spoke from experience as she is an Albino. She described some of the social challenges that albinos face daily. She also shared some of the myths and misconceptions about the condition.
“People do not understand us. They believe all sorts of myth such as the idea that albinos do not die, they vanish. In some families, it’s believed that albinos are a curse. Another social challenge is that people look at you differently than how they look at other people. It’s a sad reality that we face daily,” she said.
According to healthline.com, Albinism comprises a rare group of genetic disorders that cause the skin, hair, or eyes to have little or no colour. It is also associated with vision problems. A study by the National Organization for Albinism and Hypopigmentation (NOAH), suggests that approximately one in 17 000 people have a form of albinism. (NOAH)
Lorette Botha, nursing lecturer at the University of the Free State, says society doesn’t realise that Albinism is a medical condition like any other. She explained what it is and how it is passed on.
"It’s a medical condition that runs in the genes. For an albino child to be born, either one parent or both must carry the genes. It can be compared to other medical conditions that run in the family or genes," she explained.
Healthline.com also suggests that there is no cure for albinism. However, treatment to relieve symptoms and prevent sun damage is available. It includes:
• The right sunglasses to protect the eyes from UV rays
• protective clothing and sunscreen to protect the skin from UV rays
• prescription eyeglasses to correct vision problems, and
• surgery on the muscles of the eyes to correct abnormal eye movements
According to the website, it’s very important that people with albinism limit their outdoor activities due to their skin and eyes being sensitive to the sun. This is because UV rays from the sun can cause skin cancer and vision loss in some people with albinism.