Description

Albinism is a genetic condition that can cause problems with eyesight such as photophobia (sensitivity to light), involuntary eye movements, and skin sensitivity to the sun. But it is also life-threatening – at least in certain parts of Africa.

A recent spate of killings of people with albinism for body parts in East Africa 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. Tanzanian president, Jakaya Kikwete, publicly condemned the persecution of people with albinism for their body parts, which are believed to bring good luck. Even their graves have had to be sealed with concrete to stop grave robbers.

There are two main types of albinism. Ocular albinism mainly affects the eyes, while the most common form, Oculocutaneous albinism, affects a person’s hair, skin and eyes. This type is also found in all populations, although at different frequencies. In Bantu-speaking populations in sub-Saharan Africa up to one in 2,000 people are affected, a prevalence that is up to 10 times higher than in the UK, where around one person in every 17,000 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. In addition to sun damage, the absence of protective pigment also makes them vulnerable to skin cancer. Low vision from the lack of melanin in their eyes has a major impact on daily life. While 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, 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.

So what can be done to counter the misconceptions about 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 UN’s refugee agency 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. And it marks an important recognition on the part of the international community of the challenges faced by people with the condition.

An annual Albinism Awareness Month in Africa in September and the designation of July 13 as International Day of Albinism are also raising the profile of albinism.

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, which initially focused on literary representations of albinism as a symbolic trope in French and Francophone literature, has led to collaborations 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. Our article points out, for example, that parents of children with albinism may not be given an adequate explanation of the cause of their child’s condition, though genetic causes aren’t always believed. Another issue is that people can hold simultaneous beliefs in Western and traditional medicine.

I have become progressively more convinced that the greatest impact to be made is through collaborations between researchers, NGOs, associations and people with albinism. 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.

Ultimately, all people with albinism should be able to live their life to the fullest, despite their condition, and not live in fear for their life.