Marcus speaks up about living with Tourette Syndrome

Marcus Chua says family and society need to be more understanding of a child with Tourette Syndrome, a neurodevelopmental disorder. (Moganraj Villavan @ FMT Lifestyle)

KUALA LUMPUR: Marcus Chua is many things: a part-time school coach, a parcel packer, and a young man living with Tourette Syndrome.

The 23-year-old has been navigating life with vocal and motor tics, which are involuntary movements, since childhood, enduring misunderstanding, judgment, and even physical assault.

But through it all, he has held on to one message: “Be strong. Don’t give up. This is not a disability, it’s a different ability.”

“You have to be strong and have a positive mindset. For kids with Tourette’s, life can be full of struggles – but with the right support, it’s possible to live a full, meaningful life,” Chua shared at the Tourette Syndrome Awareness Programme at Hospital Pakar Kanak-Kanak UKM last week.

The event, organised by the Tourette Association of Malaysia (TAM), aims to raise awareness of the neurological disorder, promote early diagnosis, and create a more inclusive environment for individuals living with the disorder.

Event attendees got a firsthand glimpse into the experiences of those with the condition through talks, personal testimonies, and community dialogue.

Chua, a pioneer member of TAM, established in February 2024, said that the association has been life-changing.

“Back then, my condition was really severe. But Subri Safar, the chairman of TAM, believed in me. He saw my struggles and helped me push through. Now, more people are joining TAM, and today’s event is a big step forward for us to show the public what Tourette’s really is.”

(L-R) Raja Muda Perlis Tuanku Syed Faizuddin Putra Jamalullail, Raja Puan Muda Perlis Tuanku Lailatul Shahreen Akashah Khalil and deputy women, family and community development minister Noraini Ahmad officiated the event last week. (Moganraj Villavan @ FMT Lifestyle)

“Malaysia currently lacks official data on individuals living with Tourette Syndrome. This reflects a broader issue of limited awareness and underreporting,” said Mohd Subri Safar, TAM’s founder and chairman.

Subri added that TAM was committed to initiating a structured data collection effort, so they can better advocate for policies, healthcare access, and inclusive support systems.

Tourette Syndrome is a neurological condition that typically appears between the ages of five and 10. It is characterised by motor and vocal tics – sudden, repetitive, involuntary movements or sounds. These can range from eye blinking and facial grimacing to throat clearing or repeating words.

Dr Nor Amelia Mohd Fauzi, consultant neurologist and movement disorder specialist at Hospital Al-Sultan Abdullah, UiTM Puncak Alam, stressed the importance of early detection and understanding of the disorder.

“Detection is very important. Parents need to be aware of the early signs, especially motor tics, which are very common. But more importantly, they need to understand their children. This awareness isn’t just crucial for the child or the family, it’s for the whole community,” said Nor Amelia.

According to her, some of the early signs include frequent blinking, facial twitches, sudden shoulder jerks, or repeated sounds and words. These are often mistaken for behavioural issues, delaying necessary medical attention.

Dr Nor Amelia Mohd Fauzi, a consultant neurologist and movement disorder specialist, says early detection of Tourette Syndrome is important. (Moganraj Villavan @ FMT Lifestyle)

Parents, she stressed, should stay vigilant and seek help from professionals such as neurologists or psychiatrists if they suspect their child has symptoms of the disorder.

“We are not experts as parents, and that’s okay. That’s why it’s important to bring your child to a specialist who can guide you through the diagnosis and management process,” she said.

Improved access to professional care, however, also depends on broader systemic recognition.

“TAM is currently working to have Tourette Syndrome officially recognised as one of the categories under Persons with Disabilities (OKU) in Malaysia.

“Many members who have been formally diagnosed by medical specialists have yet to receive their rights due to the lack of official recognition,” said Subri.

Chua shared that his mother initially struggled with guilt after his diagnosis.

“She felt regret, and it wasn’t easy for her to understand what I was going through. But her support was everything. Parents need to be there, not just physically, but emotionally. Be a warm reminder, a calm presence. That makes all the difference.”

Today, Chua is living independently and confidently, and using his story to inspire others. He still remembers how a small act of kindness during a school exam – a friend silently tapping his shoulder as he cried – left a lifelong impact.

“A small gesture like that made me feel calm and loved. It reminded me that even the tiniest support can mean so much,” Chua concluded.