The theme chosen for this year’s World Albinism Awareness Day 13/6 is ‘Strength beyond all odds’, with activities throughout the year to highlight achievements. achievements of people with albinism around the world, demonstrating that people with albinism can defy all odds, and celebrating how people with albinism around the world meet and exceed expectations. wait in all areas of life.
Theme 2021 – Strength beyond all odds What is albinism? Albinism is a rare, non-contagious genetic difference that is inherited from birth. In almost all types of albinism, both parents must carry the gene for the inheritance, even if they do not themselves have albinism. The condition is found in both sexes regardless of ethnicity and in all countries of the world. Albinism results in a lack of pigment (melanin) in the hair, skin, and eyes, leaving the skin vulnerable to sunlight and light. As a result, most people with albinism are visually impaired and prone to skin cancer. There is currently no cure for the absence of melanin pigment. Singer and model Connie Chiu was born in Hong Kong. As the fourth child in a Chinese family, she is the only one born with albinism. Connie and her family moved to Sweden, where she grew up studying art and journalism. (Photo: OHCHR) It is estimated that in North America and Europe 1 in 17,000 to 20,000 people have some form of albinism. The condition is much more common in sub-Saharan Africa, with an estimated 1 in 1,400 people affected in Tanzania and a high prevalence of 1/1000 for certain populations in Zimbabwe and other specific ethnic groups in South Africa. Health challenges of people living with albinism The lack of the pigment melanin makes people with albinism very susceptible to skin cancer. In some countries, the majority of people with albinism die of skin cancer between the ages of 30 and 40. Skin cancer is preventable when people with albinism enjoy the right to health care, including the right to regular checkups, the use of sunscreen, sunglasses, and sun-protective clothing. In some countries, these ‘lifesaving’ means are not readily available or very difficult to reach for those with the disease. Thus, in a developing world, people with albinism have been and are among the “farthest left behind”. The United Nations emphasizes the need to target human rights interventions in the manner envisioned by the Sustainable Development Goals. Due to a lack of melanin pigment in the skin and eyes, people with albinism often experience permanent vision loss. (Photo: Eyes on Europe) People with albinism and human rights People with albinism face many forms of discrimination. Albinism is still deeply misunderstood, both socially and medically. The physical appearance of people with albinism often makes them objects of alienation due to false beliefs and superstitions that have existed for centuries. Such misconceptions are still present in attitudes and practices around the world. This makes people with albinism even more marginalized and excluded. Independent UN expert on the rights of people with albinism The United Nations Human Rights Council passed a resolution in 2013 calling for the prevention of attacks and discrimination against people with albinism. Furthermore, in response to calls from civil society organizations to support the designation of people with albinism as a specific group with special needs requiring special attention, the Council adopted the mandate Independent Expert on Human Rights of People with Albinism. In June 2015, the Human Rights Council appointed Ms. Ikponwosa Ero as the first Independent Expert on the human rights of people with albinism. An albino child parades through the streets of Harare during World Albinism Awareness Day 2016. (Image: AP) Violence and discrimination against people with albinism Although it is reported that people with albinism globally face stigma and discrimination, information about cases of physical attacks targeting people with albinism mainly comes from present in African countries. People with albinism face more severe forms of discrimination and violence in those areas, where most of the general population is relatively dark-skinned. In other words, a greater degree of contrast in pigments generally leads to a higher degree of discrimination. Albinism is a rare, non-communicable condition that is inherited at birth. The disease is found in both sexes, regardless of ethnicity, in all countries of the world. (Photo: UN) There have been hundreds of assaults and murders with albinism reported in 28 countries in sub-Saharan Africa over the past decade. The attacks have several root causes including longstanding stigma, poverty and harmful practices stemming from beliefs in the wizarding world. The alarming fact is that these horrible practices continue to this day. The way in which people with albinism face discrimination, and how severe it is, varies from region to region. In the Western world, including North America, Europe and Australia, discrimination often includes name-calling, persistent teasing and bullying of children with albinism. There is little information from other regions such as Asia, South America and the Pacific. However, some reports indicate that in China and other Asian countries, children with albinism face abandonment by their families. Quynh Hoa According to United Nations