Motor neurone disease, a rare and fatal condition, affects thousands in Malaysia with early diagnosis and support crucial for patient care.
PETALING JAYA: It begins quietly – a weakened grip, a slurred word, a stumble dismissed as fatigue. But for those diagnosed with motor neurone disease (MND), the decline is relentless, stripping away movement, speech and eventually, breath.
Also known globally as amyotrophic lateral sclerosis (ALS), MND remains one of the most devastating neurological conditions in Malaysia.
While the disease gained international recognition through figures such as Stephen Hawking and campaigns such as the ice bucket challenge, local awareness is still evolving.
Legendary Malaysian footballer Mokhtar Dahari, fondly remembered as “Super Mokh”, died from ALS on July 11, 1991 at the age of 37 – a stark reminder of the disease’s silent toll in the country.
In conjunction with World Rare Disease Day on Feb 28, Malaysians are being urged to recognise the challenges faced by patients living with rare conditions such as MND and to support efforts aimed at strengthening awareness, early diagnosis and access to care.
According to Benny Ng, chairman of Motor Neurone Disease Malaysia, MND attacks the nerves responsible for voluntary muscle movement.
“It is like the wiring system in a car. Your brain sends signals to your muscles – to move your hands, legs or to speak. But when the wiring is damaged, the signal cannot go through.”
The cause remains unknown and there is currently no cure.
Symptoms vary depending on where the disease begins – the hands, throat, legs or chest muscles.
Weak grip, slurred speech, difficulty swallowing, frequent tripping and breathing problems are among the warning signs. They are often mistaken for fatigue, stroke or other conditions.
“The danger is that many think they are just tired,” Ng says.
In Malaysia, the World Health Organisation estimates 30 to 50 cases per 100,000 people, translating to roughly 1,000 new cases annually and a total prevalence of 2,000 to 3,000.
Yet only 20 to 30% of patients are identified and connected to support networks.
“In rural areas especially, some doctors may not immediately recognise the symptoms. Patients go home without answers,” Ng said.
Registered in 2014 and structured with full-time staff since 2022, MND Malaysia serves as a crucial bridge linking patients to neurologists in hospitals such as the University Malaya Medical Centre, Kuala Lumpur Hospital and Hospital Canselor Tuanku Muhriz.
The organisation focuses on building what Ng describes as an “ecosystem” – outsourcing specialised services while subsidising patient needs.
Since 2022, it has covered up to 80% of costs for relief caregivers, provided mobility vans and medical equipment at negotiated prices, and delivered physiotherapy, dental and eye-care services directly to patients’ homes.
“Vital devices like BiPAP machines support breathing, while eye-tracking technology enables patients who have lost speech to communicate or even write books,” he said.
Beyond medical care, the association also seeks to restore dignity and create meaningful memories.
In 2023, it helped a former scientist fulfil his dream of riding a three-wheeled Harley-Davidson in Johor Bahru – he died three months later.
Another patient, a former lecturer who can neither speak nor write, realised her wish of having a family portrait taken and has since authored three books using eye-tracking technology.
Globally, MND continues to claim high-profile lives.
Hollywood actor Eric Dane, known for his role in Grey’s Anatomy, died from ALS last month, just months after publicly revealing his diagnosis – underscoring the disease’s swift and unforgiving progression.
Despite ongoing advocacy, MND Malaysia receives no fixed government grant and relies on public donations and corporate partners.
Those wishing to help can even donate their reward points to MND Malaysia via the Petronas Setel app.
Although the Health Ministry recognises rare diseases, funding remains limited. Some RM25 million has been collectively allocated, but access is uneven.
“Those who know how to apply may get more. Those who don’t – how?” said Ng, and called for transparent and equitable disbursement to ensure smaller patient groups are not overlooked.
Ng said early diagnosis remains a persistent challenge, with 99% of patients waiting one to two years for confirmation. Many are initially referred to orthopaedic or spinal specialists, losing precious time and resources.
Through its referral network, MND Malaysia aims to shorten this delay, guiding patients and families towards appropriate care and reassurance.
Raising awareness remains central. MND adviser Len Meng Fui underscores the media’s role.
“Early diagnosis comes from awareness. When people read about MND, they can point someone in the right direction.”
For a disease with a typical lifespan of two to five years post-diagnosis, early recognition can significantly improve quality of life.
“MND may not have a cure yet, but patients deserve dignity, comfort and hope. Awareness, timely support and a connected community can make all the difference,“ said Len.
Those wishing to contribute may do so via bank transfer to Persatuan Penyakit Motor Neuron Malaysia’s Maybank account (514-123-636-197) and are encouraged to send proof of payment, together with their full name, to MND Malaysia via WhatsApp at +6012-901 3798.
The Sun Malaysia
