SHAH ALAM, Aug 3 — Tourette Syndrome should be formally recognised as part of the category for disabled persons, following ongoing difficulties patients face in accessing systematic healthcare facilities.
The Tourette Association of Malaysia's (TAM) patron Datuk Badrul Hanif Ahmad Hadi said that awareness of the syndrome remains low in Malaysia, and sufferers are often perceived as strange or odd by the general public.
“Some of our members have applied for the disabled persons card for five to six years, but still have not been successful. Only after joining the association were we able to assist them in liaising directly with the Department of Social Welfare (JKM), and their applications were finally accepted,” he said.
Badrul was speaking during the Tourette Syndrome Awareness Programme organised by TAM at the Universiti Kebangsaan Malaysia Children's Specialist Hospital in Cheras recently.
In a symbolic gesture of support, two patients were presented with MoCards in recognition of their eligibility to receive assistance from JKM.
Tourette Syndrome is a neurological disorder that causes involuntary movements and vocalisations known as "tics".
Badrul added that most sufferers face numerous challenges in their daily lives, including in education, employment, and personal safety.
“They are often victims of discrimination and subjected to demeaning jokes because of their uncontrollable behaviour, which is not easily understood by the public.
“In rural areas, many are still unaware of this syndrome. When a patient experiences tics, they are often wrongly perceived as being ‘jinxed’,” he said, voicing concerns over potential safety risks.
“Imagine one of our members is driving and suddenly experiences tics that result in an accident. In today’s social media age, such incidents could go viral and worsen the situation — the patient might even be harmed due to being misunderstood,” Badrul said.
As such, he urged the government or institutions of higher learning to conduct comprehensive clinical studies and research to identify the causes and best treatments for the syndrome.
“In fact, no grants have been received so far, and all of TAM’s activities are carried out on our own initiative,” Badrul said.
According to health records, it is estimated that three to seven in every 1,000 children are affected by Tourette Syndrome, though no official data has been recorded to date.
As such, TAM chairman Mohd Subri Safar called on more patients to register as members of the association to help establish a national database.
“We hope more Tourette warriors will come forward and join TAM. If we have strong data, it will be easier to fight for their rights and needs more effectively,” he said.
