Albinism is a rare, non-contagious, genetically inherited difference present at birth. 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. Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. As a result, almost all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for the absence of melanin that is central to albinism.
While numbers vary, it is estimated that in North America and Europe 1 in every 17,000 to 20,000 people have some form of albinism. The condition is much more prevalent in sub-Saharan Africa, with estimates of 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.
Health Challenges of People Living with Albinism
With regard to health challenges, the lack of melanin means persons with albinism are highly vulnerable to developing skin cancer. In some countries, a majority of persons with albinism die from skin cancer between 30 and 40 years of age. Skin cancer is highly preventable when persons with albinism enjoy their right to health. This includes access to regular health checks, sunscreen, sunglasses and sun-protective clothing. In a significant number of countries, these life-saving means are unavailable or inaccessible to them. Consequently, in the realm of development measures, persons with albinism have been and are among those “left furthest behind.” Therefore, they ought to be targeted for human rights interventions in the manner envisioned by the Sustainable Development Goals.
Due to a lack of melanin in the skin and eyes, persons with albinism often have permanent visual impairment which often lead to disabilities. They also face discrimination due to their skin colour; as such, they are often subject to multiple and intersecting discrimination on the grounds of both disability and colour.
While growing up, "some people treated me as less of a human being because they believed I had supernatural powers," Moses Swaray told Africa Renewal in an interview.
Like many others living with Albinism, Moses had been subject to persecution since he was a child due to superstitions about albinos. Having relocated to the US some years ago, he is now a highly sought-after gospel artist within the African diaspora community.
Unlike Moses, many people with Albinism living in Africa continue to be at risk. In Tanzania, some 75 albinos were reported killed between 2000 and 2016.
Photo: © Panos/Dieter Telemans.
Violence and discrimination against persons with albinism: a global phenomenon?
While it has been reported that persons with albinism globally face discrimination and stigma, information on cases of physical attacks against persons with albinism is mainly available from countries in Africa.
Persons with albinism face more severe forms of discrimination and violence in those regions where the majority of the general population are relatively dark-skinned. … In other words, a greater degree of contrast in pigmentation often gives rise to a greater degree of discrimination. That appears to be the case in some sub-Saharan African countries where albinism is shrouded in myth and dangerous and erroneous beliefs. The figures on violations against persons with albinism are telling. Since 2010, there have been around 700 cases of attacks and killings of persons with albinism in 28 countries in Sub-Saharan Africa. These are reported cases alone. The attacks have several root causes including ignorance, longstanding stigma, poverty and most abhorrently, harmful practices emanating from manifestation of beliefs in witchcraft. The alarming reality is that these horrendous practices continue today.
The manner in which discrimination faced by persons with albinism manifests itself, and its severity, vary from region to region. In the western world, including North America, Europe and Australia, discrimination often consists of name-calling, persistent teasing and bullying of children with albinism. Little information is available from other regions such as Asia, South America and the Pacific etc. However, some reports indicate that in China and other Asian countries, children with albinism face abandonment and rejection by their families.