GD05 ‘Ghosts’: changing perceptions of people with albinism in Tanzania

Abstract

Abstract Albinism, derived from the Latin word albus meaning white, is a rare genetic condition characterized by an absence of melanin leading to an individual having pale skin, eyes and hair. It is believed that Tanzania has the highest rate of albinism in Africa with the autosomal recessive gene being carried by one in 19 Tanzanians and the condition impacting one in 1400 people (Cruz-Inigo AE, Ladizinski B, Sethi A. Albinism in Africa: stigma, slaughter and awareness campaigns. Dermatol Clin 2011; 29:79–87). We aim to analyse the perception of individuals with albinism in Tanzania and strive to consider the future of those with albinism and reflect on the work being done. A recurring theme throughout the literature is the fact that those living with albinism in Tanzania are often shrouded in mysticism, stigma and violence. Referred to as ‘ghosts’, they are often on the fringes of society, ostracised by their communities and labelled as having supernatural powers. It is this superstition that has led to the brutal attack and murder of members of the disenfranchised albino population in Tanzania with the belief that their body parts, which can be sold for as high as $75 000, bring luck, as well as possessing powers. It is only in recent times that attention has been brought to their plight and work has begun to unravel these deeply entrenched beliefs. The United Nations (UN)-sanctioned International Albinism Awareness Day is on 13 June and aims to shed a light on the work being done to support people living with albinism globally. In 2013, the UN Human Rights Council adopted legislation to prevent violence against people with albinism, as well as a 2015 Mandate of an Independent Expert on the enjoyment of human rights by persons with albinism. A lot of work is being done on the ground by charitable organizations to empower people living with albinism in Tanzania through education and provision of safe shelter and resources. The role of dermatologists in the support of people with albinism in Tanzania cannot be ignored. Owing to decreased melanin levels in those with albinism, there is an increased risk of skin cancer due to a lack of protection against ultraviolent radiation. Dermatologists can play a crucial role, as part of a multidisciplinary team, in providing skin cancer prevention education, as well as providing education to reduce stigma against those living with albinism (McBride SR, Leppard BJ. Attitudes and beliefs of an albino population towards sun avoidance: advice and services provided by an outreach albino clinic in Tanzania. Arch Dermatol 2002; 138:629–32).