UNDERSTANDING ALBINISM
What is albinism?
Albinism is a rare, non-contagious, recessive genetic condition that limits the body’s ability to produce melanin, resulting in reduced or absent pigmentation in the skin, hair, and eyes. The condition often affects vision as well as pigmentation. Albinism occurs when both parents carry the recessive gene, giving a 25% (1 in 4) chance of having a child with albinism in each pregnancy, independent of previous births.
Globally, approximately one in 17,000 people is born with oculocutaneous albinism (OCA), although prevalence varies widely. In Sub-Saharan Africa, prevalence ranges from around 1 in 4,000 to 1 in 7,000, with some regions experiencing much higher rates. In parts of Tanzania for example, prevalence has been documented to be as high as one in 1,400 births, making it one of the highest rates worldwide. South Africa reports around one in 4,000, with higher frequencies among certain ethnic groups. In Europe and North America, OCA is less common, estimated at between 1 in 12,000 and 1 in 20,000, although misdiagnosis and underreporting may mean true figures are higher.
Oculocutaneous albinism type 2 (OCA2) is the most common form in Sub-Saharan Africa, contributing to the higher prevalence in the region.
Low vision
and skin cancer
People with albinism have reduced melanin, which affects both skin and eye pigmentation. This can cause visual impairment and a greatly increased risk of skin cancer, especially in the tropics and regions with strong sun exposure. In Sub-Saharan Africa, these risks are particularly severe: many people with albinism face life-threatening skin cancer and many die before the age of 40 if preventive measures are not available.
Albinism does not affect intelligence or ability, and no scientific studies link the condition to impaired brain function. Visual impairment can be managed with glasses, low vision devices, and adjustments to lighting or seating. Skin cancer risk can be significantly reduced by using sunscreen, wearing long-sleeved clothing and wide-brimmed hats, and avoiding direct sun during peak hours.
With the right support, tools, and awareness, people with albinism can lead full, healthy, and empowered lives, even in regions where the risks are greatest.
Albinism in Africa
People with albinism in Africa face steep barriers to healthcare, education, housing, and employment. Without regular access to sunscreen, skin checks, and sun-safety education, many develop preventable skin cancers—the leading cause of premature death among persons with albinism on the continent.
Visual impairment, if unsupported, can make learning and working difficult. Many are pushed into outdoor jobs, where prolonged sun exposure further increases their risk of skin cancer. Stigma, exclusion, fear of attack, and constant health risks can also take a heavy toll on mental health, leading to stress, anxiety, and social isolation.
Breaking this cycle requires holistic support—medical care, education, economic opportunities, and psychosocial services must work together to help people with albinism thrive.
Myths and Murders
In the most extreme cases of violence, People with albinism are being marginalised, mutilated, and murdered across Africa simply because of their skin. Visibly paler than their peers and families, they are stigmatised and dehumanised by a range of harmful myths. Limited understanding of genetics, combined with persistent beliefs in witchcraft, has allowed these misconceptions to thrive. Albinism is often falsely seen as contagious, a curse, or an omen. Some believe people with albinism are ghosts who do not die but disappear. Women with albinism have reported being raped due to the erroneous belief that their bodies can cure infertility or AIDS.
Hundreds of people with albinism have been attacked or killed because of the myth—spread by profit-seeking witch doctors and individuals that their body parts bring wealth and fortune when used in rituals. Since 2006, there have been over 250 documented murders and over 850 human rights violations against people with albinism across 30 African countries, though many more are likely unreported. Tanzania and Malawi account for more than half of these atrocities, and most victims are children.
Our Response
Standing Voice works alongside people with albinism to break the destructive cycle of stigma, exclusion, and preventable death. For more than a decade, our programmes have transformed access to healthcare, education, and livelihoods—training frontline workers, expanding dermatology services, improving eye care, supporting trauma recovery and mental wellbeing, and strengthening community welfare and advocacy networks.
By equipping people with albinism with the tools, knowledge, and opportunities to protect their health and claim their rights, we are building safer, more inclusive communities across Africa.
Learn more about our programmes here.
