Turks born with albinism hope for understanding and to set an example for others shunning socialization as they marked International Albinism Awareness Day on Monday.
The lifelong condition may appear harmless but this rare genetic anomaly means less time in the sun for the albino community, along with strange looks from others unaware of their condition.
Hikmet and Sefa Emdi, an albino couple living in Istanbul, aspire to set an example for others with their condition to socialize and show resolve in the face of all difficulties. With their 3-year-old daughter and 1-year-old son, who also have albinism, the couple spoke about their “success story” against all odds.
Sefa Emdi, who works as a geography teacher at a high school, says “nothing changed” in her life when she found out she had albinism at an early age. She acknowledges though that people gave her “looks” at times because of her appearance. “People with albinism can take up any job. I know doctors, pharmacists, others with albinism and we will continue to live our lives like others. We only expect more understanding from others,” she says.
She counts her children “lucky” in terms of education as people with albinism have vision problems that are not correctable with eyeglasses. “Back in my time, we were not able to see the blackboard clearly due to our condition and had to sit in the front row all the time. Now, the children have access to more technology, more assisting educational tools, like better glasses or smartboards and accessibility tools in tablet computers. I am not concerned about their education,” she says. She said she faced “negative” incidents in the past but nowadays people are more understanding and aware of albinism.
Her husband Hikmet, who works as a muezzin at a mosque, says he became aware of his albinism after being "bullied" in primary school. “Those were difficult days. I thought I was the only one in the world with this condition,” he recalls. He also faced the challenge of not having albino parents growing up. “My parents did not know that I needed sunscreen. I was burning under the hot sun and I had swellings in my arms,” he recounted. Born in an industrial hub in northern Turkey where most people worked in factories, Emdi had little luck finding a job due to his weak eyesight until he was introduced to reciting the Quran by his father. “I had a good memory and did not need to read much to memorize the Quran. So, I chose this profession,” he says.
He says he occasionally encounters people who are not aware of his condition. “Some people mistake my white hair with old age and ask if I will retire soon,” he says.
Fatma Ateş, a 25-year-old woman with albinism, says her condition did not deter her as she looks forward to completing her studies at the second university she will graduate from soon. Working as a radio DJ in the central Turkish province of Aksaray, Ateş says she fulfilled her “childhood dream.”
Despite heavy loss of vision, Ateş managed to graduate from high school with top honors. She enrolled at university and graduated from the Department of Turkish Language and Literature in 2020. She was admitted to remote courses at another university in Istanbul in 2019. For the past two years, she works as a DJ.
“The Turkish public does not have much awareness about albinism. They see us as different. We attract attention everywhere we go,” she says. “Some people even thought I was adopted because my parents did not have albinism,” she adds.
Their condition determines what people with albinism can do during the day. “I can’t go out between noon and 4 p.m. because of the sunlight. I have to do whatever I am supposed to do during the day outside these hours,” Ateş says.
Nevertheless, she says people with albinism should not “restrict themselves.” “I am an albino and cannot see properly. Yet, I did everything I wanted to do so far. What matters is to have the resolve,” she says.
