Physical Effects of Albinism
In humans, the term albinism refers to a group of inherited conditions where there is little or no production of the pigment melanin in the skin, hair and/or eyes. People with albinism generally look different from their families because their skin and hair lack the usual amount of pigmentation. Reduced or absent pigment in the eyes causes some degree of uncorrectable low vision. Reduced or absent pigment in the skin makes the person with albinism more vulnerable to the harmful effects of the sun and more susceptible to suffer from skin cancers.
Albinism is rare. The exact incidence of albinism can only be estimated due to lack of precise statistics
Psychosocial Effects of Albinism
People with albinism generally look significantly different than their families due to the lack of pigment in the skin. The difference in appearance is exacerbated when there is a high degree of contrast between the skin tone of persons with albinism and that of the dominant population in their community. It often leads to social stigma based on skin color. An additional ground for stigma is attached to the disability caused by the low vision of persons with albinism.
Persons with albinism are therefore exposed to the intersecting discrimination of both disability and color, with significant psychosocial impact This bias ranges from teasing and social exclusion to discrimination in school and employment. In some regions of the world, discrimination can take extreme forms and lead to violent attacks and killings to obtain body parts.
In some regions of the world, women who have albinism or who give birth to children with albinism may face aggravated forms of discrimination. They may often be blamed for the misunderstood condition and face divorce, abandonment, neglect and exclusion from their community.
Compounded discrimination entails extreme vulnerabilty and higher risk of poverty for themselves and their children. To know more: Women and Children Impacted by Albinism (2019).
In numerous countries around the world, witchcraft-related beliefs and practices are an underlying cause of considerable violence against persons with albinism. In Africa, where myths about them being ghosts, their body parts having supernatural powers or an ability to curse or cure, are widespread, persons with albinism live in fear of kidnappings, mutilations, killings and grave desecrations. These attacks are committed for obtaining limbs, skin or hair for ritual use by witch doctors under the erroneous belief that they would bring wealth or success.
Beliefs and practices related to witchcraft vary between countries and even within ethnicities in the same country. To learn more:
- Report of the UN Independent Expert on albinism on the workshop on witchcraft and human rights (2018)
- In 2021, the UN adopts a historic resolution condemning harmful practices related to accusations of witchcraft and ritual attacks.
Human Rights Advocacy for Persons with Albinism
In search of remedies against the physical and psychosocial impacts of their condition, people with albinism started coming together to form organizations and support groups. The first group dates from 1978 when the Tanzania Albinism Society was formed. Since then over 200 albinism organizations have been created around the world.
Albinism organizations generally gather persons with albinism, their families, doctors and teachers to share information and support relative to the condition. Advocacy in society, particularly in school and the workplace is a common activity of albinism organizations. To know more about albinism organizations worldwide, and what motivated them to form the Global Albinism Alliance, read the
GAA report on Albinism Organizations
When attacks on persons with albinism in countries of Eastern and Southern Africa were relayed by international media in early 2000, the serious human rights concerns linked to albinism in these regions could no longer be ignored. They spanned a spectrum of violence and abuse such as abandonment, stigmatization, normalized isolation and discrimination of persons with albinism by their communities, infanticide, physical attacks and kidnapping, killings, sexual violence, difficulty to access education and employment, degrading and inhumane treatments, grave desecration, maiming, trafficking, etc.
A Brief History of Human Rights Advocacy for Persons With Albinism
The discrimination and abuses registered against persons with albinism in some regions constitute violations affecting:
- The right to life
- The right to justice
- The right to education
- The right to work and adequate standards of living
- The right to health
First Human Rights Council resolutions
Consequently, in 2013, albinism officially became a matter of human rights when the United Nations Human Rights Council invoked the Universal Declaration of Human Rights and Human Rights Treaties in support of two resolutions in the same year, calling an end to attacks and discrimination against persons with albinism and urging States to take all measures necessary to prevent further attacks.
The resolutions also requested the Office of the High Commissioner on Human Rights to submit a preliminary report on attacks and discrimination against persons with albinism.
The UN proclaims an International Albinism Awareness Day
In 2014, the UN General Assembly raised the profile of albinism by proclaiming June 13 as International Albinism Awareness Day.
Creation of the United Nations Mandate for an Independent Expert on Albinism
In March 2015, following the preliminary report submitted by OHCHR and in the face of the complexity and extent of the violence and discrimination against persons with albinism it uncovered, the UN decided to appoint by Resolution A/HRC/28/L.10 an Independent Expert on the enjoyment of human rights by persons with albinism. The mandate is for 3 years and renewable.
The role of the Independent Expert on albinism is mainly to engage in dialogue and consult with States and other stakeholders, to report annually on developments and challenges to the realization of the enjoyment of human rights by persons with albinism in all regions of the world, and to make recommendations to the Human Rights Council in this regard. To that end, she makes country visits and drafts reports on these visits.
- To learn more about the Mandate of the UN Independent Expert: click here.
- To consult the reports of the UN Independent Expert to the Human Right Council, click here.
- To consult reports on the country visits by the UN Independent Expert (Mozambique Malawi Tanzania, Kenya, Fiji, South Africa, Brazil), click here.
Ms IK Ero was the first Independent Expert appointed in 2015. The UN Mandate of the Independent Expert on albinism was renewed in 2018 and in 2021. The current mandate holder is Ms Muluka-Anne Miti-Drummond.
Albinism and Human Rights Worldwide
The enjoyment of their human rights by persons with albinism varies greatly between regions and countries. Substantive reports about albinism and human rights have been written in the last few years. They give an overview of the situation of persons with albinism in different regions worldwide, summarizing legislation and policies and identifying gaps in the enjoyment of human rights, as well as best practices. Such reports are helpful resources for a variety of stakeholders including national human rights institutions and grassroots albinism organizations.
Physical Effects of Albinism
Below is a concise summary of the most important physical aspects of albinism. This information will be expanded in the future. A great deal of additional information on the medical and scientific aspects of albinism in humans is available on the Internet. The GAA recommends that you rely on information found on the Internet at websites authored by established medical and scientific institutions.
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Melanin gives skin, hair, and eyes their color.
The cause of albinism is a defect in one of several genes that produce or distribute melanin, the pigment that gives skin, eyes, and hair their coloring. The defect may result in the absence of melanin production or a reduced amount of melanin production. Low or no melanin production in persons with albinism is due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin.
Albinism occurs in all racial and ethnic groups throughout the world.
Albinism is not a disease, it is not contagious and it cannot be spread.
It is generally believed that albinism occurs on average in about 1 in 18,000 persons worldwide. However, in some regions of Africa it is estimated that 1 in every 5,000 to 15,000 people have albinism. An incidence of as high as 1 in 250 has been observed in some remote areas with relatively closed populations.
A common myth is that people with albinism have red eyes. Although lighting conditions can allow the blood vessels at the back of the eye to be seen, which can cause the eyes to look reddish or violet, most people with albinism have blue eyes, and some have hazel or brown eyes.
A common misconception is that all people with albinism have extremely pale hair, skin. In fact people with albinism have a wide range of coloring in their hair ranging from platinum white to various shades of blonde or reddish. Likewise there is a range of skin tones for people with albinism.
Generally people with albinism have some degree of uncorrectable low vision due to the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain.
Due to reduced or absent melanin pigment in the skin, it’s important for persons with albinism to avoid sun damage to the skin and eyes by taking precautions such as wearing sunscreen or sunblock, hats, sunglasses and sun-protective clothing.
There are several different types of albinism. The different types of albinism include:
- Oculocutaneous (pronounced “ock-you-low-kew-TAIN-ee-us”) albinism, or OCA, affects the skin, hair and eyes. Several genes have been determined to cause OCA in an autosomal recessive inheritance pattern.
- Ocular albinism (OA), affects only the eyes. OA is inherited in a sex linked pattern.
- Hermansky-Pudlak syndrome, or HPS, is a type of albinism that includes the characteristics of OCA along with the possibility of blood disorders, bruising issues, lung, kidney or bowel diseases.
- Chediak-Higashi syndrome is a type of albinism that includes the characteristics of OCA along with immune and neurological issues.
Except for vision problems, and additional metabolic problems found in the syndromic forms of albinism most people with albinism enjoy typical health and life span.
There are no known connections between albinism and developmental delays. People with albinism have typical intellectual skills.