30 September 2014
September is Albinism Awareness month in Africa, an event that is increasing in profile thanks to the work of the associations and NGOs that advocate for people with albinism. It is just one of many recent initiatives that aim to raise awareness of a genetic condition that is now recognised as life-threatening in parts of Africa.

A recent spate of killings of people with albinism for body parts in East Africa has made the headlines around the world. In Tanzania alone, 151 killings and attacks on people with albinism have been recorded by the NGO Under the Same Sun since 2006. The Tanzanian President Kikwete has publicly condemned the persecution of people with albinism for their body parts, which are believed to bring good luck. Their graves have even had to be sealed with concrete to stop grave robbers.

Oculocutaneous albinism (OCA2) is found in all populations, although at different frequencies. In Bantu-speaking populations in Africa 1 in 2-4000 people are affected, a prevalence that is ten times greater than in the UK, where around 1 person in 17000 has albinism. People with albinism lack the pigment melanin in their hair, skin and eyes, making them strikingly different in appearance from the majority of black Africans. The absence of protective pigment makes their skin vulnerable to sun damage and skin cancer. The lack of melanin in their eyes results in low vision, which has a major impact on daily life. Much remains to be done to improve the lives of people with albinism, such as raising awareness about sun protection, educating teachers about simple steps to make materials accessible, and countering the prejudices of family and community. But the situation is aggravated by a lack of awareness of the genetic cause of albinism. As a result, people with albinism are often surrounded by a web of belief and superstition, which can make their condition life-threatening.

So what can be done to counter the misunderstandings that surround this genetic condition and improve the lives of people with albinism? Associations that advocate for the rights of people with albinism have an invaluable role to play. It is thanks to their work that the UNHCR adopted Resolution 24/33 for the prevention of attacks on people with albinism in 2014. The Resolution underscores the need for effective action to protect and preserve their rights to life and security. It marks an important recognition on the part of the international community of the challenges faced by people with the condition. The organisation of the annual Albinism Awareness Month in Africa and the designation of 13th July as International Day of Albinism have also raised the profile of albinism on the international agenda.

Researchers also play an important role in better understanding the genetic, biological and socio-cultural realities of the condition. Research continues to open up new perspectives on albinism and the exchange of knowledge with colleagues in Africa is becoming increasingly important. My own work focused initially on literary representations of albinism as a symbolic trope in French and Francophone literature, including my book. More recently, however, I have collaborated with researchers in the biomedical sciences, social sciences and education. An article I co-authored with geneticist Patricia Lund, Professor of Nursing Julie Taylor, and Richard Nyathi from the Zimbabwe Albino Association on the myths surrounding albinism in Southern Africa is an example of this collaborative work.

I have become progressively more convinced that the greatest impact to be made is by researchers, NGOs, associations and people with albinism working together. In the last few years I have increasingly engaged with NGOs and associations supporting people with albinism in Africa. Funding from the Wellcome Trust in 2014 enabled me to establish a research-led network to explore interdisciplinary approaches to albinism, and to develop the Albinism in Africa website, which aims to provide accurate and accessible information to people with albinism and those supporting them. A Knowledge Exchange Fellowship from Lancaster University has allowed me to organise a conference in Douala, Cameroon in 2015, bringing together clinicians, researchers, NGOs and associations to facilitate the sharing of knowledge and expertise across disciplines and to open up new areas for possible collaboration.

Please see the full text in The Conversation here.

Dr Charlotte Baker teaches on our European Languages and Cultures programmes