Albino Turks complain of slights, healthcare costs

ANADOLU AGENCY
ANKARA
Published 13.06.2016 20:32
Updated 14.06.2016 15:06

Stares from strangers in the street and cruel jibes from children are just some of the everyday slights faced by people with albinism around the world.

In Turkey, as in many other countries, people with albinism often have to deal with a degree of social marginalization that makes it difficult to find work. They also have to cope with extra financial costs associated with their condition.

Burcu Çakır, the founder of Turkey's Albinism Association, is using International Albinism Awareness Day on Monday to call on the government to raise awareness of the problems faced by Turkey's estimated 4,000 people with albinism.

Çakır, who has a six-year-old son with albinism, told Anadolu Agency: "We expect support for youngsters and adults living with albinism in working life." Albinism affects around one in 17,000 people in Europe. The condition is a result of genetic mutations that affect melanin-producing cells, causing very pale hair, skin and eyes. People with albinism also usually suffer from poor eyesight as well as conditions such as nystagmus, or involuntary eye movements, and sensitivity to light. Skin cancer is a major risk for people with albinism. "Public service announcements should be prepared and broadcast on television channels to raise awareness," Çakır said, noting that previous attempts to raise awareness had failed. She also called for the government to help with the cost of spectacles and sun protection.

Elif Ekinci, 32, from Istanbul, said she typically paid out around TL 700 ($240) every six months on eyewear - a significant sum in Turkey where the average monthly household disposable income is the equivalent of around $1,120 according to the Organisation for Economic Cooperation and Development.

Approximately one in 17,000 people in the world suffer from some form of albinism and an estimated 4,000 live across Turkey. Although the treatment of people with albinism in Turkey is far from that received by those with the condition in some other parts of the world such as east Africa, Mustafa Türkmen says he and others are treated differently.

"It is both different and difficult but the best thing is everyone remembers you even after many years," he said. "Also you do not have the luxury of being lost in the crowd." Türkmen, 23, from Turkey's southern province of Adana, said people make several assumptions about him. "At airports, some people presume we are foreigners and try to speak other languages such as English, German or Russian," he said.

Mecnur Duman, 23, of Istanbul, also has the condition. "I am treated as if I am a tourist, which is enjoyable," he told Anadolu Agency. "I establish close relationships with foreign tourists because they assume I'm their countryman."

However, he remembers his childhood as a more difficult time. "You become the subject of jokes... In addition, I had a difficult time in school due to the insensitivity of teachers." Poor vision meant sitting at the front of the class, where even some teachers mocked his condition.

According to Çakır, children with albinism receive little support from the state in dealing with their condition, which can have a psychological impact and make it difficult to forge friendships.

"It is the teacher who must ensure a rapport between the child and his or her friends but unfortunately few act with this awareness," she said. "Children can sometimes be cruel among themselves. Challenges occur in games. Naturally, hide-and-seek game is not a favorite [for children with albinism] as they cannot see clearly. "Besides vision problems, skin reaction to sunlight and psychological problems, people living with albinism face unkind, mocking and dismissive reactions from society."

Çakır founded the Albinism Association in 2013 and has worked with the media and through holding conferences for associated professionals to raise awareness. Elif Oğuz said her family used to refer to her as being disabled and told her she would have little chance of finding a husband. Recently engaged, the 26-year-old from Istanbul says she is annoyed by people asking questions about her appearance. "I am not getting married to prove myself to other people," she said. "I am aware of what is going on around me. I am getting married because my fiance values me."

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