Strategies to Address Vulnerable Populations

Albinism in Africa

Oculocutaneous albinism (OCA) is much more common in certain parts of Africa than elsewhere in the world. However, there are limited statistics regarding the incidence and prevalence of albinism in Africa in the current literature. Approximately 1 in 1429 in Tanzania, 1 in 4182 in Zimbabwe, and 1 in 4000 in South Africa have OCA, which is strikingly disparate from the prevalence rates in the United States (1 in 37,000) and globally (1 in 20,000). Therefore, the albino population in Africa represents an incredibly vulnerable group of people.

Firstly, the majority of Africans have dark complexions; therefore, an albino’s fair skin stands in stark contrast to their darker counterparts. This dissimilarity is readily apparent to the local populace and lends itself to public scrutiny. Albinos are often segregated from their community due to erroneous myths surrounding the genesis and transmission of albinism. Many people believe OCA is contagious, and will therefore avoid physical contact with a person with albinism.  Another common belief is that the family of an individual with albinism is being punished for having previously mocked an albino. The resulting stigma associated with albinism can lead to depressive symptoms and ostracism.

Secondly, the lack of melanin pigment in OCA incurs an increased predilection for skin cancer, particularly squamous cell carcinoma. Hence, individuals with albinism must take proper precaution against the sun’s ultraviolet radiation (UVR) in order to protect themselves from developing potentially lethal cutaneous neoplasms. A study conducted in Tanzania clearly demonstrated how susceptible persons with albinism are to the carcinogenic potential of UVR: 100% of children had skin damage in their first year of life, and 50% of individuals between the ages of 20 and 30 had advanced, symptomatic skin cancers.

Even more striking, the study authors identified an albino child as young as 9-years-old who had already developed skin cancer. Furthermore, less than 2% of children with albinism living in Tanzania have a life expectancy of up to 40 years of age, and most die between the ages of 20 and 30. At the time of the study, 23.53% of the general Tanzanian population was older than 35-years-old, as compared to less than 10% of the albino study population. However, promising research has demonstrated that persons with albinism can live substantially longer with proper sun protection.

Thirdly, multiple ocular impairments are associated with OCA, including hypopigmentation of the iris and retina, hypoplastic fovea, hyperopia, severe myopia, strabismus, photophobia, loss of stereoscopic perception, and nystagmus. These visual disturbances may limit the type of work a person with albinism can accomplish without appropriate ophthalmic care, which is oftentimes prohibitively expensive. Without visual aids or special assistance in school, such as priority seating close to the blackboard and the provision of textbooks with enlarged text, many albinos succumb to academic pressures and drop out of school. Deprived of a proper education, persons with albinism have limited employment opportunities; unfortunately many resign themselves to manual labor, such as agricultural fieldwork, which exposes their vulnerable skin to noxious UVR.  UVR is more potent and therefore carcinogenic near the equator, thereby further increasing their risk of skin cancer.