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

Nikia Phoenix (from the US) used to participate in some local model competitions when he was a teenager. Because her face has many freckles, she has to wear heavy makeup to cover it. However, Phoenix gradually realized that this was not necessary because she could contribute to a change in beauty standards. Currently, female models regularly take close-up photos of the face, neck and shoulders. Image: @nikiaphoenix. Polly Ellens has many freckles spots and tattoos all over the body. Ellens used to cover freckles with a temporary tanning cream. After that, the British girl changed her mind and became confident with her bare face. Freckles spots, tattoos on the skin help Polly Ellens attract eyes. She promotes brands that do not portray women to be perfect. Ellens wants every girl to be given equal opportunity and empowerment. Image: @pollyellens. Diandra Forrest is an African American model and actress. She and a family brother have albinism. Forrest had a difficult childhood because he was often ridiculed for his appearance. At the age of 14, she met a female fashion designer. This person advised Forrest to believe in his own beauty and strength. When going to college, Diandra Forrest was recommended by a photographer to Elite Models. She became the first albino model to sign a contract with the world-famous model management company. Image: Forbes. Connie Chiu is known as the world’s first albino model. She was born in 1969 in Hong Kong, China. People with albinism are often sensitive to light. Therefore, to avoid the scorching heat in her homeland, her family brought her to Sweden at the age of 7. Connie Chiu started her modeling career at the age of 24. Chiu sent her black and white photos to designer Jean-Paul Gaultier. Shortly thereafter, he invited her to participate in the fashion show Fall – Winter 1994 of the brand. Image: South China Morning Post. Shaun Ross bring the interference between fashion and music. The American guy is a rare artist who completes well in the two areas above. Ross started his career as a model at the age of 16. He is considered the first albino male model in the world. The boy born in 1991 appeared in major magazines such as Vogue, Nylon, GQ . Shaun Ross also works with high-end fashion brands such as Givenchy and Alexander McQueen. Image: Citizen Newspaper Group. A major turning point in his career Winnie Harlow is a meeting with photographer Nick Knight in the UK. This partnership helped Canadian-born long legs gain attention in the fashion industry. In 2018, Winnie Harlow became the first vitiligo model on the Victoria’s Secret lingerie catwalk. She also plays ads for many fashion houses such as Fendi, Marc Jacobs, Tommy Hilfiger, Desigual, Diesel, Swarovski, Steve Madden, Nike, Puma, MAC … Photo: Good Morning America. Storm Dovê Frederick has a distinct appearance when the skin of the face, arms and legs is vitiligo. In high school, Frederick hid his vitiligo skin with makeup. She uses foundation and concealer to make sure no one can see her real face. After entering college, the American girl stopped makeup and left her bare face while going out. Through her modeling work, Storm Dovê Frederick wants to encourage everyone to be confident and love themselves. Image: @stormdove. Alpha Ndoye Starting a career in modeling in “half-hearted”. In April 2020, he and his girlfriend were trapped in Italy because of an epidemic. The lover sent Ndoye’s profile to model management company Vega Models. The young man from Senegal was suddenly selected. Alpha Ndoye is considered to be a potential model group. He used to be hurt a lot because of the stigmatizing eyes of people. Ndoye did not dare to believe that his different appearance led him to the fashion world. Male model mentioned above Models : “What makes me cry a lot has become my strength”. Image: @ndoye_alpha. 10 models are sought after at fashion weeks Adut Akech, Kaia Gerber, and sisters Gigi – Bella Hadid are prominent names in the high fashion model village.