Today we celebrate International Albinism Awareness Day with the global theme “shining our light to the world”. People with albinism continue to face multiple forms of discrimination worldwide. The United Nations (UN) reports that Sub-Saharan Africa has more people with albinism with an estimated 1 in 1,400 people being affected in Tanzania, and prevalence as high as 1 in 1,000 reported for select populations in Zimbabwe and for other specific ethnic groups in Southern Africa.

Albinism is still profoundly misunderstood, socially and medically leading to an unsafe environment for people with albinism particularly in Africa. Elsewhere globally, in North America and Europe 1 in every 17,000 to 20,000 people have some form of albinism.

“The battle continues, but we are gaining ground,” UN expert on the enjoyment of human rights by persons with albinism Ikponwosa Ero said.

“Today, we celebrate the remarkable contributions of persons with albinism including Goldalyn Kakuya, a 14-year-old girl with albinism, who topped Kenya’s national primary school exams in December and shattered stereotypes and myths”.

“Indeed, it is still often believed that persons with albinism are unable to learn. This prejudice illustrates the particular discrimination they face regarding access to education, including persistent bullying and the absence of reasonable accommodation for the vision impairment that is often part of albinism” Ero said in a statement.

Read: Zimbabwe crowns first Miss Albinism 2018 in a push against stigma

Children stand on stage during a pageant hosted by the Albinism Society of Kenya in Nairobi on October 21, 2016. Billed by organisers as the first pageant of its kind, young men and women competed for the title of Miss and Mr Albinism Kenya. Photo: ANP/ AFP Tony Karumba

“While we celebrate, we take a moment to reflect on those who have been attacked and lost their lives or were mutilated because they have albinism….Indeed the battle continues, but we are gaining ground,” Ero said.

In her statement, Ero also shared the inspirational story of six women with albinism including victims of attacks and mutilation who are currently preparing to reach the summit of Mount Kilimanjaro, shattering myths about albinism from one of the highest points in the world. “This campaign is a richly symbolic demonstration of the capabilities of women with albinism.” Ero noted.

Albinism is a rare, non-contagious, genetically inherited difference present at birth characterised by little or no melanin (The pigment that gives human skin, hair, and eyes their colour) production.  According to the UN, in almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world.

Read: Beauty of Diversity: Meet twins Lara and Mara aspiring models with albinism

This lack of pigmentation (melanin) in the hair, skin and eyes, causes vulnerability to the sun and bright light, thus most if not all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for this condition. Albinism groups say more than 90% of people with the condition in Africa die before they reach 40-years-old. Sadly, the physical appearance of persons with albinism has much beliefs and myths influenced by superstition hovering around it. Persons with albinism have thus continued to suffer marginalisation and social exclusion leading to various forms of stigma and discrimination.

Commenting on efforts to fight discrimination and raising awareness in Africa and globally,  António Guterres, the UN Secretary-General said in a statement: “The endorsement of a Regional Action Plan on Albinism in Africa by the African Commission on Human and People’s Rights as well as by the Pan African Parliament is a key step forward. But much more can be done globally to raise awareness about the plight of people with albinism”.

“International Albinism Awareness Day is an opportunity to declare solidarity with people with albinism and strive together so those who are often left furthest behind are able to live free from discrimination and fear, and empowered to enjoy their full human rights” Guterres added.