KUALA LUMPUR, June 8 — The public's awareness of motor neurone disease (MND) remains low in Malaysia and lags far behind awareness of other serious illnesses.
Canselor Tuanku Muhriz Universiti Kebangsaan Malaysia (UKM) Hospital's consultant neurologist Assoc Prof Dr Rabani Ramli said the situation is concerning because it results in many patients being diagnosed only at an advanced stage, making treatment and support efforts more challenging.
“Awareness of MND in Malaysia is extremely low. Most of our patients initially consult other specialists, such as orthopaedic specialists, because they believe they have a different condition.
“Only after those specialists conduct examinations and find no underlying problem are the patients referred to a neurologist,” she said.
Dr Rabani was speaking to Media Selangor after delivering a lecture in conjunction with Brain Health Day, organised by UKM’s Faculty of Medicine on May 12.
She added that MND symptoms vary from one patient to another and often develop very slowly, causing sufferers to remain unaware of the severity of their condition until significant impairment has already occurred.
This rare disease often strikes without warning during the prime years of an individual’s life, although some patients may have a family history of the condition or specific genetic mutations.
The most notable example was national football legend Datuk Mohd Mokhtar Dahari, who suffered from MND at the age of 35 before passing away on July 11, 1991.
Similarly, renowned British physicist, cosmologist, and author Stephen Hawking was diagnosed with MND at the age of 21 and passed away in 2018 at the age of 76.
“Perhaps because they were highly active individuals, they were more likely to seek medical attention promptly when symptoms such as physical weakness appeared, allowing the condition to be identified earlier,” Dr Rabani said.
She estimated that 90 per cent of MND cases are sporadic, meaning they occur without a clearly identifiable cause, while five to 10 per cent have a genetic component involving mutations such as SOD1, C9orf72, and several others.
MND patients with the SOD1 gene mutation may still be treated with specialised medication available overseas, although at a very high cost.
“For patients with the SOD1 mutation, treatment is available through the medication Tofersen, which can be obtained from the United Kingdom at a cost of approximately RM1 million per year. To date, there have been no patients in Malaysia receiving this treatment,” Dr Rabani said.
Among the early symptoms of MND are gradually worsening muscle weakness, typically beginning in the hands or legs; difficulty swallowing; slurred or nasal speech; muscle cramps; and small involuntary muscle twitches.
These symptoms eventually spread throughout the body, including to the respiratory muscles, ultimately leading to the patient’s death.
