Featured in Mind Your Body, The Straits Times (Singapore) newspaper (10 September 2009)
Botak, so what?
By June Cheong
Ten-year-old Ethan Tan no longer bats an eyelid - sans eyelashes, in his case - if someone teases him and calls him botak (bald in Malay).
Ethan, a Primary 4 pupil in a Malaysian school, suffers from alopecia universalis.
This rare condition affects one in 100,000 people and refers to the absence of hair on the scalp as well as the rest of the body.
'Ethan was like any normal child when he was a baby. He had hair. It started falling off in batches when he turned four,' said Ms Rebecca Loke, 36, Ethan's mother.
At first, Ms Loke thought Ethan was lacking certain vitamins or nutrients. However, when he started losing his eyelashes and eyebrows as well, she took him to a dermatologist.
The doctor diagnosed Ethan as having alopecia universalis.
Ms Loke, a freelance writer, said: 'I felt sad that he may not have hair growth anymore. It made him look very different from other children. But I was relieved to know alopecia does not affect his health.'
With the diagnosis came clarity but also another nagging worry - whether the condition would affect Ethan's emotional well-being.
Ms Loke said: 'In the beginning, he was okay with his hair loss. It didn't bother him that much.
'It was only when passers-by in the street or other pupils in his school started calling him 'botak' that he got affected.'
Ethan said: 'I was seven years old when my mother explained to me what alopecia is. I didn't think it was good or bad.
'I started feeling hurt when bullies in my school called me names or when strangers touched my head.'
To counter the negative effects of bullying and teasing, Ms Loke and her husband, who also have a four-year-old daughter, taught their son to think positively and to be assertive.
Ms Loke said: 'When he was younger, he would get upset, cry a lot or suddenly become quiet. His initial response to others was that they were laughing at him.
'We helped him overcome that by explaining that there are people who look at you and they may laugh but it may not be about you.'
She saw to it that when Ethan enrolled in a pre-school and later a primary school, they could provide the emotional support he needed.
Ms Loke said: 'I looked for teachers who were receptive to handling this issue. When teachers are understanding, they don't ignore the problem of teasing or bullying and will explain the situation to the kids involved.'
She also gave Ethan's teachers informational leaflets on alopecia.
When Ethan was featured in a newspaper report in Selangor last year, his teacher got him to read it out to his schoolmates during assembly to help them better understand his condition.
In recent years, Ethan has grown a lot more positive about his condition.
He said: 'I have a lot of friends. They are true friends who don't just see my looks but who can see inside of me.'
Ethan's bubbly and friendly nature has helped him weather the teasing of other children and the insensitive stares from adults. However, he still has his down moments when coping with the reaction of others.
When he goes out, he prefers to wear a cap or hat. He said: 'Sometimes in school, people call me names. It's wrong because it's rude. I didn't do anything to them and I feel hurt.
'Once it's over though, I throw it out of my mind. I don't want to think about it.'
He added: 'When it's a hot day, I'm glad I have no hair. It's cooler.'
Ethan's condition and his fortitude in accepting his lot has inspired Ms Loke to write a children's book on alopecia entitled Great-Grandma's Hair Loss Remedy.
Ms Loke and Ethan were in Singapore two weeks ago to launch and promote the book.
'It's to get more people to know about alopecia. If children enjoy the story, they will remember the character and the condition,' Ms Loke said.
When asked how the family will help Ethan cope when he hits his teenage years, a period typically marked by growing pains about self-image and appearance, she said: 'We will cross that bridge when we come to it.'