WHAT IS ALBINISM?

Albinism is a rare, non-contagious, recessive genetic condition that limits the body’s ability to process melanin, reducing or eliminating pigmentation in the skin, eyes and hair. Albinism occurs if both parents carry the recessive albinism gene, in which case the probability of having an affected baby is 1 in 4 (25%). This probability is the same in each pregnancy and bears no relation to other births. Globally 1 person in 18,000 has albinism. Oculocutaneous albinism type II (OCA2) is the most common type in Sub-Saharan Africa, where the condition has a higher prevalence: 1 in 1,400 are affected in parts of Tanzania, a frequency more than tenfold the global rate.

LOW VISION AND SKIN CANCER

Melanin deficiency causes complex visual impairment, altering retinal development and nerve connections to the eye; it also eliminates natural defences against sun damage and places people with albinism at heightened risk of skin cancer, especially in hot countries. Despite these health implications, albinism is not a death sentence. People with albinism are of equal intelligence to anyone else, and no scientific study has ever linked the condition to impaired brain function or mental processing in any way. The complex visual impairment caused by albinism is non-degenerative, and does not worsen over time; vision can on the contrary be improved with glasses, low vision devices, and adjustments to lighting or seating position. The threat of skin cancer can likewise be managed by minimising exposure to sunlight (particularly around midday), applying sunscreen, and wearing long-sleeved clothing and wide-brimmed hats outdoors.

DISCRIMINATION

Albinism is poorly understood in many African societies. Many people with albinism are stigmatised because of their pale appearance. Dehumanising myths and superstitions surround the condition, with misconceptions leading to mockery, abandonment and violence. In Sub-Saharan Africa albinism is often understood to be a curse, or contagious. Some believe persons with albinism are not human and do not die, but are demons who disappear. The bodies of people with albinism are frequently said to possess magical properties, able to cure disease or deliver fortune; sex with a woman with albinism is thought to cure AIDS. Albinism is frequently viewed as the exclusive ‘fault’ of the mother, a misconception that tears apart families and leaves mothers ostracised and abused. Often seen as ghosts or ‘zeru zeru’ (‘sub-human’ in Swahili), people with albinism are segregated by their families and communities.

Discrimination impedes access to health services and isolates individuals with albinism from their families, communities and caregivers. Segregation is the root of poor health, transforming otherwise manageable symptoms into an urgent and devastating crisis. In Tanzania, where stigma is rife, 98% of people with albinism die of skin cancer before the age of 40. Only half of all children with albinism in Tanzania complete primary school; just 10% attend secondary. Those who do often struggle to read, and need vision devices to participate in class. When these are not available, academic underperformance follows. Many parents and teachers lack the knowledge to meet these students’ needs. Those who graduate often leave school ostracised and unskilled, with only 7% finding formal employment. Many are forced to work in the sun, where they are at constant risk of contracting skin cancer. Meanwhile the visible lesions caused by sun damage further contribute to perceptions of people with albinism as contagious or inferior. Together, poor health and stigma create a structural cycle of violence that places people with albinism in Africa among the poorest and most vulnerable on Earth.

MURDER AND MUTILATION

People with albinism in Africa face the threat of physical violence from infancy: in communities where dangerous myths are widespread, babies are routinely slaughtered at birth; those who survive endure years of abuse. Some are even targeted for their body parts, sold for thousands of dollars and used in witchcraft charms thought to bring wealth and fortune. This growing trade has led to the murder of 165 persons with albinism across 25 African countries (and a total of 435 attacks and mutilations). Tanzania presents a particularly severe case, with 76 murdered and 65 more attacked since 2006. Many murders are believed to have gone unreported, and it is impossible to know how many babies have been killed at birth. Those involved in this trade often operate under a code of silence, making investigation and prosecution difficult. In Tanzania, the government has placed hundreds of children with albinism in special protectorate centres to guard their safety.

OUR RESPONSE

We stand with people with albinism against any threat to their wellbeing.

By creating integrated Health, Education, Advocacy and Community Programmes, we advance the ability of people with albinism to define themselves as vital members of their communities. We meet social exclusion and violent abuse head-on with empowering initiatives tailored to individual needs and aspirations.