Teen with skin disease recalls being ostracised in school

Seventeen-year-old Hamzah has congenital ichthyosis, a disorder that causes hard, scaly skin. It also affects his vision, movement and even body temperature.

When he was in kindergarten, the principal told Hamzah's mother to ensure that he would arrive at school later than his peers so that nobody would see his skin condition.

"There were parents who had suggested that their child be removed from my class," Hamzah told Berita Harian.

He added that he would be placed with students with special needs in school and when in public places, the person taking a seat he vacated would make a show of wiping it down.

"Many patients feel marginalised as there is a lack of awareness about their condition," said Associate Professor Mark Koh, chairman and senior consultant at KK Women's and Children's Hospital Department of Dermatology.

"We want to change this perception and ensure they get the support they need."

Prof Koh is a co-founder of Rare Skin Conditions Society Singapore (RSCS), which was established in 2017 to create a support group for patients and families with genetic and incurable rare skin conditions and build an inclusive society for them.

Individuals who suffer from rare skin diseases deal with more than scars and blisters on their faces, hands, feet or the entire body.

It affects their daily lives and, with no cure in sight, may cause them to end up feeling ostracised.

RSCS also helps subsidise the cost of treatments.

Madam Nurdiyanah Jam Hari shared that the skincare cost for her three-year-old son could hit a few hundred dollars each month.

Like Hamzah, Rafif Akari Abdul Hadi suffers from congenital ichthyosis.

"We have to ensure his skin is constantly moisturised and protect it from extreme temperatures," said Madam Nurdiyanah, adding that the moisturiser alone costs $50 for a tub that lasts Rafif a fortnight.

Her one hope now is for there to be a greater awareness of skin diseases.

"We often receive insensitive questions and funny stares from strangers," said Madam Nurdiyanah.

"There are also those who believe skin diseases are infectious, failing to understand that it's a genetic condition that does not spread."