Albinism is a rare and non-contagious genetic condition inherited at birth where the lack of the pigment melanin, leaves one’s skin, hair and eyes devoid of colour. Some people with albinism have visual impairment too.
With today being International Albinism Awareness Day, FMT Lifestyle spoke to those who are breaking stereotypes and proving that albinism doesn’t define them.
For 30-year-old Nur Izzati Zakaria from Machang, Kelantan, her schooling years were the most trying.
“Since my vision is limited, I couldn’t participate in most sports. I had to put up with teasing from students, especially boys who would, for example, call me a statue. So, I looked for friends who could accept me for who I was.”
Among seven siblings, four of whom have albinism, Izzati said she leaned on her family for support as it was the only way she knew how to cope with the discrimination she faced.
“People like us, who have disabilities, have really low self-esteem. They may be afraid to speak for themselves,” she shared, adding that greater societal awareness about the condition was needed so that those with albinism could find acceptance in society.
Now a primary school teacher, Izzati excelled as a para chess athlete during her university days and has a collection of medals to show for it. Today, she coaches students in chess at her school.
“Now that I’m in the workforce, I’ve noticed that more and more individuals are very helpful, without us asking for it.”
For Syed Muhammad Danish Syed Mohammad Ekhzubir, 18, living with albinism was tough especially when in school.
“I bought binoculars leading up to the exams, so that I can see the whiteboard better,” he said with a laugh. He has just completed his SPM examinations.
Addressing a common misconception, Danish said it was not true that those with albinism must avoid sun exposure entirely. However, he said people with albinism did stand a higher risk of developing skin cancer from prolonged sun exposure compared to others.
Danish’s father, Syed Mohammad Ekhzubir Syed Alias, recalled the initial shock and confusion he felt at his son’s birth. “I didn’t know what was wrong with him, and many of the doctors didn’t either. They suggested that maybe he wasn’t fully developed yet.”
Upon receiving the diagnosis of Danish’s albinism, Ekhzubir admitted to feeling anger and some degree of embarrassment.
“I asked my relatives and my wife’s relatives if anyone has albinism, which would explain why Danish has the condition. But there was no one like him in either of our families,” he shared.
However, those negative feelings have given way to pride and joy for his son, for the person Danish has become and for everything Danish has accomplished.
Danish said that people with albinism were as “normal” as those around them and just as capable of success whether academically or otherwise.
And he would know, improving his SPM mathematics results from a “G” for his trial examination to a “A” in the actual examinations.
FMT Lifestyle also spoke to Maizan Mohd Salleh, the founder and current president of the Kuala Lumpur and Selangor Albinism Association for the past 16 years since its establishment in 2006.
As both a lawyer and a person with albinism, Maizan shared: “The level of awareness about this condition is on a rise. However, much still needs to be done, and can be done, in Malaysia and globally.”
She said that embracing diversity and fostering inclusivity are key.
“Everyone is uniquely different. So, celebrate differences and accept how people live and do things differently. There’s a whole lot we can share from one another to build a more caring and progressive world.”