Albinism in Africa: a medical and social emergency

People with albinism (PWA) face a variety of medical and social problems, ranging from poor vision and skin cancer to murder for their body parts for witchcraft in East Africa, notably Tanzania. Albinism is an inherited disorder of melanin biosynthesis that results in a variable phenotype classified according to the mutation in one of several genes.

All forms of albinism are associated with problems of the visual system resulting in abnormalities of the retina, nystagmus, strabismus, foveal hypoplasia, abnormal crossing of the optic fibers, photophobia and reduced visual acuity.

In addition to their vision problems, PWAs are also highly susceptible to skin cancer with high rates of squamous and basal cell carcinoma. Sunscreens are expensive and often unavailable in many parts of Africa, so health intervention strategies mainly focus on encouraging sun avoidance and protection from an early age. Historically, some tribes have killed newborns with albinism and those that survive are often discriminated against as marriage partners.

Sadly, in the past few years, PWAs in Tanzania face an additional threat. They are being murdered at an alarming rate for their body parts (primarily bones and hair) used for witchcraft purposes. Local superstition holds that the bones, hair and other body parts of a PWA can be used in potions believed to be magical for success in finding things, such as in mining. In the past, obtaining of body parts was largely limited to grave robbing, but living people are increasingly targeted now for murder and mutilation for their body parts. In particular, the bones of a PWA are quite valuable for these witchcraft uses, with the highest price paid for the bones of children.

PWAs face enormous challenges in East Africa. They have very poor, uncorrectable vision and, as a result, they are disadvantaged in schools and in employment opportunities. At best, they are discriminated against; at worst, they are hunted and often killed for their body parts for witchcraft use. If they survive these attacks, they are very likely to develop skin cancer that is most often untreated, leading to a preventable premature death. However, awareness and activism can help PWAs to lead more normal lives by addressing their medical and social needs.  Above all, we must all work to stop these atrocities against these people who suffer from a visible genetic condition.