‘The bomohs wanted to help’: Firdaus’s journey with ichthyosis

PETALING JAYA: The flakes began to fall the moment Muhammad Firdaus Mehat settled into his seat.

“We always joke about it,” he said. “People see white flakes on the chair and ask, ‘Eh, where did the snow come from?’ We tell them that’s our version of snow in Malaysia.”

The “snow” is actually skin. Firdaus, 52, has spent his entire life living with ichthyosis, a rare genetic disorder that causes skin cells to grow too quickly and shed too slowly, leaving the skin dry, thick and scaly.

For decades, the condition itself was overshadowed by something else: misunderstanding.

Growing up in Alor Setar in the 1970s, Firdaus is believed to have been the first Malaysian diagnosed with the disease. Public awareness was virtually non-existent and even doctors knew little about it at the time.

“People had never seen someone like me before,” he said. “Some thought it was contagious. Some thought it was a curse. Some thought something supernatural had happened.”

As a child, he found himself caught between traditional beliefs and modern medicine.

“I was like a living experiment,” he added with a chuckle. “Everybody wanted to try something. The doctors wanted to help, the bomohs wanted to help. None of them worked, of course.”

Looking back, he bears no resentment. Medical science was still evolving and people simply did not know better.

What hurt more was the isolation. “I didn’t have trouble making friends at school – it was what their parents said that was really hurtful,” Firdaus recalled.

“They told their kids not to get near me or they might get it, too. Some even used me as a warning to their children.”

Today, he gets where those fears had come from.

“There was no internet then. There were no awareness campaigns. People were scared because they didn’t understand.”

Yet it was during those years that his parents taught him a lesson that would shape the rest of his life.

“My family always told me, be friends with people who want to be your friend. Those who don’t want to, don’t be angry with them. Don’t keep hatred in your heart.”

It is advice by which he still lives today.

Like many people living with ichthyosis, Firdaus faces challenges most Malaysians never have to think about. The condition can cause painful skin cracks, increase the risk of infection, and make it difficult for the body to regulate temperature.

Some patients, including himself, cannot fully close their eyes, while others struggle with overheating because they lack functioning sweat glands.

Then there is the daily routine of applying creams and moisturisers, a task that never truly ends.

Still, Firdaus refuses to let the condition define him. One misconception he is particularly eager to challenge is that people with rare diseases are incapable of leading ordinary lives.

“We are human too,” he stressed. “We want friends. We want a career. We want to get married. We want to be loved.”

Happily, Firdaus has achieved all of those things. He works at a government agency, is married and has a 22-year-old son.

He also serves as president of Pertubuhan Kebajikan Pesakit Ichthyosis Malaysia. Much of his time is now spent helping families navigate the same fears his own parents once faced.

Whenever he hears of a newborn diagnosed with ichthyosis, he and his friend Wan, who also has the condition, reach out to the family.

“I know what is going through the parents’ minds,” he said. “They are scared. They don’t know what the future will look like. They also don’t know what to do.

“So we advise them on what to do, what not to do, and what they need to prepare for.”

His role is not merely to offer advice but hope. He cited a family in Sungai Petani with two children who live with a particularly severe form of the disease.

Today, thanks in part to Firdaus and Wan, both children are attending school and have far exceeded the prognosis they were initially given.

More than five decades after his diagnosis, Firdaus is still fighting misconceptions about rare diseases. That is why he continues sharing his story.

“Don’t judge people by how they look,” he said. “Take the time to understand first. Once people understand, everything becomes easier.”

This article is part of the Suriana Welfare Society’s ‘Because It’s Rare We Care’ initiative, aimed at spreading awareness on various rare diseases in Malaysia.

Learn more about Suriana Welfare Society here.