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Women Account For 83% Of Multiple Sclerosis Cases In Malaysia

When his wife, Norzey Md Nata, became unconscious for a whole month and then bed-ridden for a year-and-a-half after she suffered from a relapse of multiple sclerosis, Rizal Aminuddin moved the family of six to accommodate her treatment and rehabilitation, and gave up his construction business to manage the children and household.

Dr. Fariz Abdul Rani, Country Disease Area Lead for Neuroscience and Rare Disease, Roche (Malaysia) ; Dr. Chey Shin Yee, Consultant Neurologist; Dr. Low Soon Chai, Consultant Neurologist; Rizal Aminuddin, President of Multiple Sclerosis Society of Malaysia (MSSM). Photo courtesy of Roche Malaysia.

KUALA LUMPUR, April 29 – Norzey Md Nata was in her thirties when she suffered from optic neuritis — a condition which occurs when inflammation damages the optic nerve — in her left eye. The optic nerve enables people to process visual information and stimuli by transmitting messages from the eyes to the brain.

Norzey met with a neurologist at Hospital Serdang where she was given a prescription of steroids and recovered within a month. Around a couple of months later though, the same symptoms presented in her right eye and she was given the same course of treatment.

For every two months or so after that, she began developing new symptoms including diplopia (double vision) and paralysis of the lower limb. After consultation with a neurologist at Hospital Kuala Lumpur (HKL), Norzey was diagnosed with MS.

A Neurological Condition That Affects The Brain And Spinal Cord

MS is a neurological condition that affects the brain and spinal cord (the central nervous  system) which control all bodily functions. MS damages the coating that protects the nerves, which is also known as myelin.

This loss of myelin or demyelination disrupts the ability of the nerves to conduct electrical impulses to and from the brain. 

As a result, people with MS can experience a varying range of symptoms. Symptoms can range from mild to debilitating and rarely are two patients’ symptoms alike.

Symptoms can include blurred vision, dizziness, fatigue, numbness and tingling, muscle spasm, stiffness and limb weakness, mobility issues, speech difficulties, vertigo, pain, bowel or bladder problems and difficulty in swallowing.

“Multiple sclerosis is a life-long incurable condition. It is five times more common in women than in men,” said Dr Low Soon Chai, a consultant neurologist, during a panel discussion last month at the launch of a medicine to treat the disease. 

“The disease is highly unpredictable. For some, it means going through phases of getting better (remission) and then experiencing setbacks (relapse), while for others, it follows a continuous worsening over time.

“Nonetheless, people with all forms of MS experience disease activity such as inflammation in the nervous system and permanent loss of nerve cells in the brain, even when their clinical symptoms aren’t apparent or don’t appear to be getting worse.”

He added: “The important goal when treating MS is to reduce disease activity as soon as possible to slow down the disability progression. If not well managed, individuals with severe multiple sclerosis may develop irreversible or complete disability.” 

Prevalence Of MS

As of 2020, MS affects 2.8 million people worldwide. This equates to one in 3,000 people in the world living with MS.

A higher prevalence is recorded in North America, Europe, and parts of Australia with as many as one in every 300 people having MS. 

Although the prevalence of MS is lower in Asia, symptoms suffered by patients are no less severe than those in the West.

In Malaysia, it is listed as a rare disease with an estimated prevalence of six per 100,000 population. 

“MS may be a rare disease but there is an urgent unmet need to improve the diagnosis, treatment and management of MS.

Women account for 83 per cent of the MS incidence in Malaysia,” said Deepti Saraf, general manager of Roche Malaysia.

“It is our hope that women will not have to go through this debilitating condition which undoubtedly impacts their future as well as their roles in society.”

Norzey Suffers A Relapse

In 2013, new lesions were discovered in Norzey’s brain and she was warded at HKL where she was unconscious for more than a month.

She underwent a plasma exchange procedure, which involves removing the patient’s plasma (liquid content of the blood) and replacing it with donor plasma or a substitute like albumin.

Plasma is removed and replaced because it contains the antibodies that can cause autoimmune diseases.

She was then put on a course of cyclophosphamide, a medication that is used for chemotherapy, and gradually regained consciousness.

However, she remained bed-ridden for one-and-a-half years before being referred for rehabilitation at Hospital Rehabilitasi Cheras.  

Norzey has been on a disease modifying therapy since 2016. She is now able to walk by herself for a certain distance and carry out simple house chores, said her husband, Rizal Aminuddin, who is president of the Multiple Sclerosis Society of Malaysia.

Different MS Subtypes

In her presentation, Dr Chey Shin Yee, a consultant neurologist, explained the different MS subtypes, which include Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS), and Primary Progressive MS (PPMS).

“People with RRMS experience episodes of relapses of neurological symptoms, followed by periods of improvement or remission.

“An episode can last for days or weeks and recovery could take weeks or months, depending on the symptoms, with some patients never recovering fully from their symptoms.

“Over time, some individuals with RRMS may transition to SPMS, where there is a gradual worsening of neurological function and disability accumulation, even without relapses. This transition typically occurs after many years of living with RRMS.” 

PPMS is a rarer form of MS, according to Dr Chey. “Unlike RRMS, where individuals experience episodes of worsening symptoms followed by periods of remission, PPMS is characterised by a steady worsening of symptoms from the beginning, without distinct relapses or remissions.

“People with advanced MS may have to rely on mobility aids or become wheelchair bound, and are unable to work and need carers to look after them sooner.”

“Brace Yourself, Encik Rizal”

Rizal was not familiar with MS at all prior to his wife’s diagnosis. “I never heard or knew about MS until the doctors released the diagnosis of my wife and the only words I could remember from the doctor (were): ‘Brace yourself Encik Rizal’.”

“I was lost and I started to gather information about the disease and only came to understand about MS after my wife experienced a series of relapses, followed by the major relapse in September 2013.

Among the major adjustments he had to make to accommodate his wife’s treatment included moving from Semenyih to Bangi and ensuring that their children’s schooling was not  interrupted. The couple share four children.

An architectural designer and consultant, Rizal also gave up his construction company to fully focus on taking care of Norzey.

“Throughout the treatment and rehabilitation period, I was the only person who managed the household needs and the treatment of my wife,” he said adding that, at the time, awareness and understanding of MS was very limited.

“I did not have support from other family members as no one knew how to deal with a person with MS. It was also difficult for me to explain to help (them) understand about MS.” 

Rizal said they also tried various alternative treatments but nothing worked. “We finally came to terms with my wife’s condition and continued with medical treatments that provided better outcomes.”

Treatment For Relapsing MS

At the event, Roche Malaysia announced the availability of Ocrevus in Malaysia, a twice-yearly convenient dosing option for the treatment of relapsing forms of RRMS and PPMS. 

Patients who received Ocrevus in two clinical trials had reduced relapses by nearly half (46 per cent), according to its manufacturer.

It also proved effective at slowing down progression, with participants on Ocrevus being less likely to have disability progression (40 per cent), while a small percentage had disability progression (9.8 per cent). More people (33 per cent) also showed disability improvement after three months with Ocrevus. 

Ocrevus was approved by the United States’ Food and Drug Administration (FDA) in March 2017. It was approved in Malaysia last November 2023 for both RRMS and PPMS. 

The medicine has been included in Roche’s Patient Assistance Program (RPAP) which helps eligible patients access their prescribed Roche medicines under a subsidised scheme to support their overall treatment cost.

“Speaking from experience as a MS caregiver, the journey a patient goes through can be quite traumatic if they are not channelled to the right treatment and medical support early,” said Rizal.

“Patient assistance programmes help ease the financial burden of the patient and their families, ensuring the patients can access the necessary care with ease of mind.”

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