Expert & MLDA Share Insight into a Rare Disease Called Pompe Disease

WORDS MALAYSIA LYSOSOMAL DISEASES ASSOCIATION (MLDA)

FEATURED EXPERT
DR NGU LOCK HOCK
Consultant Clinical Geneticist and Paediatrician
Hospital Kuala Lumpur

While rare diseases may seem distant to many, they are more prevalent than commonly perceived. Dr Ngu Lock Hock highlights that thousands of rare diseases collectively affect around 300 million individuals worldwide.

Among these is Pompe disease, a genetic disorder characterized by a deficiency in the enzyme acid alpha-glucosidase (GAA), leading to muscle weakness due to glycogen build-up. In Malaysia, there are only 17 diagnosed cases of Pompe disease.

What happens inside our cells when we have Pompe disease. Click on the image for a larger, clearer version.

SYMPTOMS OF POMPE DISEASE
The following symptoms often manifest when one is a baby or young child.
  • Severe muscle weakness.
  • Breathing difficulties.
  • Swallowing issues.
  • Floppy baby syndrome: babies with weak muscle development that impairs their ability to make normal movements.
  • Older children experience difficulties in walking and experiences frequent falls.

Identifying these symptoms early is paramount, as prompt diagnosis and intervention can significantly impact disease progression.

Parents who suspect Pompe disease in their child should seek consultation with clinical geneticists, paediatricians, and neurologists.

Clinical geneticists in particular currently are available only in major public hospitals across Malaysia such as:

  • Kuala Lumpur Hospital (HKL)
  • University Malaya Medical Centre (UMMC)
  • Universiti Sains Malaysia Hospital (USM)
  • University Kebangsaan Malaysia Medical Centre (UKMMC)
  • Penang General Hospital (HPP)
DIAGNOSING POMPE DISEASE

Confirming a diagnosis of Pompe disease relies on enzymatic, genetic and genomic testing.

Dried blood spot (DBS) testing can be a convenient first step in diagnosing the disease. This minimally invasive test collects a small blood sample, which is then analyzed to measure GAA enzyme activity levels, providing an initial indication of Pompe disease.

Newborn screening programs are also instrumental in detecting Pompe disease and other lysosomal storage disorders early on. By including Pompe disease in newborn screening panels, healthcare providers can identify affected infants before symptoms appear, enabling timely intervention and improving long-term outcomes.

However, the rarity of Pompe disease poses a hurdle to timely diagnosis. With only a handful of rare disease specialists in Malaysia, early intervention remains a considerable challenge. Many patients end up seeing different doctors and specialists, sometimes for years, without being correctly diagnosed.

Hence, Dr Ngu emphasizes the need for heightened awareness among healthcare professionals, as symptoms may be mistaken for other conditions.

THE FINANCIAL BURDEN OF POMPE DISEASE

“Enzyme replacement therapy (ERT), the primary treatment for Pompe disease, comes at a substantial cost, up to RM500,000 per year. This burden is particularly significant considering a newly approved ERT offers a more effective treatment option, providing relief from the symptoms of Pompe Disease by improving muscle strength, lung function and walking distance,” says Dr Ngu.

Additionally, there are the associated costs of supportive therapies as part of the holistic management of the disease, including respiratory support for patients with respiratory failure, physiotherapy, rehabilitation, speech therapy, pain management, dialysis, and more.

MAKING A DIFFERENCE, FOR THE FUTURE

Despite the challenges, there are glimpses of resilience and determination in Pompe disease patients.

Through MLDA, patients and their families find practical and emotional support, fostering a sense of community in the face of adversity.

In the meantime, the Ministry of Health is developing a rare disease policy that includes access to the latest treatment and sustainable funding. Many are hopeful that this will include measures to help with earlier diagnosis, such as improved training for front-liners to recognize symptoms of rare disease and expanded screening tests for newborns.

For more about the Malaysia Lysosomal Disease Association (MLDA), visit their website and Facebook (links open in a new tab).

References:

  1. Shafie, A. A., Supian, A., Ahmad Hassali, M. A., Ngu, L. H., Thong, M. K., Ayob, H., & Chaiyakunapruk, N. (2020). Rare disease in Malaysia: Challenges and solutions. PloS one, 15(4), e0230850. https://doi.org/10.1371/journal.pone.0230850
  2. Kishnani, P. S., Steiner, R. D., Bali, D., Berger, K., Byrne, B. J., Case, L. E., Crowley, J. F., Downs, S., Howell, R. R., Kravitz, R. M., Mackey, J., Marsden, D., Martins, A. M., Millington, D. S., Nicolino, M., O’Grady, G., Patterson, M. C., Rapoport, D. M., Slonim, A., Spencer, C. T., … Watson, M. S. (2006). Pompe disease diagnosis and management guideline. Genetics in medicine : official journal of the American College of Medical Genetics, 8(5), 267–288. https://doi.org/10.1097/01.gim.0000218152.87434.f3

A Robotic Surgeon Highlights the MAKO Robotics-Assisted Surgery for the Knee Osteoarthritis

WORDS LIM TECK CHOON

FEATURED EXPERT
DR YUEN JIN CHUAN
Consultant Orthopaedic, Trauma, Arthroplasty and Robotic Surgeon
Sunway Medical Centre Velocity (SMCV)

Osteoarthritis is a degenerative joint disease that affects millions worldwide and significantly impacts mobility and quality of life. It is characterized by the breakdown and eventual loss of cartilage in the joints, leading to pain, stiffness, reduced mobility, or even disability.

The most prevalent form of osteoarthritis is knee osteoarthritis, which affecting over 10-20% of Malaysia’s adult population.

MAKO ROBOTICS-ASSISTED SURGERY

Dr Yuen Jin Chuan explains that a treatment option for knee osteoporosis is MAKO robotic-assisted surgery, which is executed using the MAKO Robotic machine.

Advantages of the MAKO Robotics-assisted Surgery
  • It allows for a more precise and customized operation as it has a 3-D imaging system that creates a patient-specific plan.
  • The robotic arm assists the surgeon in making customized and better-aligned bone resections, which leads to improved joint function and longevity.
  • Conventional total knee replacement surgery can alter normal knee alignment, potentially resulting in compromised joint function. MAKO robotic-assisted surgery, on the other hand, can accurately reproduce the natural kinematics of the knee, restoring alignment and enhancing overall joint performance.
  • Reduced pain levels and recovery time.
  • A lower risk of implant failure, thus lowering the risk of complications and the need for future surgeries.
  • Patients that have undergone MAKO robotic-assisted surgery have reported higher satisfaction scores and improved joint function after their surgery.
A NEW ERA OF INNOVATIVE SURGICAL SOLUTIONS

Dr Yuen mentions that, with the prevalence of knee osteoarthritis in Malaysian adults, innovative solutions such as MAKO robotic-assisted surgical machine offer us with personalized surgical solutions, minimally invasive procedures, improved surgical outcomes and faster recovery.

“With MAKO technology, the future of knee osteoarthritis treatment promises patients revolutionary surgical procedures and enhanced patient care,” he concludes.

Experts from Taylor’s University Explain How We Can End the Threat of Tuberculosis

WORDS DR SAPNA SHRIDHAR PATIL, DR AMEYA ASHOK HASAMNIS & PROFESSOR DR WEE LEI HUM

FEATURED EXPERTS

DR SAPNA SHRIDHAR PATIL
Senior Lecturer
School of Medicine
Faculty of Health & Medical Sciences
Taylor’s University
DR AMEYA ASHOK HASAMNIS
Senior Lecturer
School of Medicine
Faculty of Health & Medical Sciences
Taylor’s University
PROFESSOR DR WEE LEI HUM
School of Medicine
Faculty of Health & Medical Sciences
Taylor’s University

Tuberculosis remains a significant global health challenge, with an estimated 10.6 million people falling ill and 1.3 million people dying from the disease in 2022 alone—making it the second largest infectious disease killer after COVID-19.

In 2023, tuberculosis cases in Malaysia were recorded at 26,781 cases, a five percent increase from the previous year.

PREVENTABLE & CURABLE, YET IT REMAINS A DEADLY THREAT

Despite being preventable and curable, tuberculosis has remained a leading cause of death from infectious diseases for decades. The 2022 numbers were the highest since the World Health Organization (WHO) began global monitoring in 1995, and above the pre-COVID baseline.

However, after two years of the COVID-19 pandemic-related disruptions, there has also been a major global recovery in the number of people diagnosed with tuberculosis and treated in 2022. These figures likely suggest a sizeable backlog of people who developed tuberculosis in previous years, but whose diagnosis and treatment were delayed due to COVID-19 that affected access to and provision of health services.

HOW TUBERCULOSIS SPREADS COMMON SYMPTOMS OF TUBERCULOSIS
The bacteria causing tuberculosis spread through tiny droplets released from the nose and mouth into the air during sneezing, coughing, or talking.
  • Persistent coughing
  • Fever
  • Chills
  • Night sweats
  • Weight loss
  • Lack of appetite
  • Fatigue
  • Coughing blood

The disease thrives in crowded environments and typically affects the lungs (pulmonary tuberculosis), but it can also affect other sites (extrapulmonary tuberculosis).

MALAYSIA’S COMMITMENT TO ENDING THE DISEASE

In Malaysia, the National TB Control Programme and the National Strategic Plan align with the WHO targets to combat tuberculosis, reflecting the country’s commitment to ending the disease, supported by three key pillars.

  • The first pillar emphasizes integrated, patient-centered care and prevention, including early case detection, and successful implementation of the BCG vaccination programme. Screening of high-risk populations, such as prison inmates and substance abuse victims, is an important strategy in early detection and enabling of timely intervention.
  • The second pillar promotes government stewardship and accountability, ensuring quality-assured anti-tuberculosis drug supply, and reducing treatment costs to alleviate patient burden.
  • The third pillar focuses on research and innovation to improve detection, treatment, and control, focusing on developing new drugs and vaccines.
INDIVIDUAL AWARENESS OF PREVENTIVE METHODS IS VITAL

These methods include practicing hand hygiene, proper cough etiquette, and wearing masks in crowded places.

Quitting smoking, maintaining a balanced diet to strengthen the immune system, and avoiding close contact with active tuberculosis cases can greatly reduce risks.

Anyone who shows symptoms of tuberculosis must consult a doctor immediately.

IN CLOSING

Challenges in addressing tuberculosis, including disrupted access to diagnosis and treatment, call for continuous strengthening of current policies and health systems. Aligning national tuberculosis response with regional and global strategies is imperative for effective management.

In Malaysia, tuberculosis initiatives not only contribute to ending the disease, but also to bolster primary health care, achieving universal health coverage and advancing the UN Sustainable Development Goals.

An Expert Offers Important Facts and Advice on Living with Nasal Polyps

WORDS DR YOGESVARAN KANAPATY

FEATURED EXPERT
DR YOGESVARAN KANAPATY
Consultant Rhinologist and ENT – Head & Neck Surgeon
Columbia Asia Hospital–Bukit Jalil

Breathing should be effortless.

Yet, for many, nasal polyps disrupt this simple act. Imagine a persistent feeling of congestion, an unrelenting blockage that complicates every breath.

Nasal polyps, often unnoticed but profoundly impactful, can turn the breathing routine into a struggle.

WHAT ARE NASAL POLYPS?

Nasal polyps are usually non-cancerous outgrowths of the nasal mucosa. The nasal mucosa refers to inner lining the nasal cavity and sinuses.

More details about nasal polyps. Click on the image for a larger, clearer version.

NASAL POLYPS CAN AFFECT ONE’S SLEEP

Mechanical obstruction of the nasal passage by the polyps, together with nasal inflammation and congestion, leads to snoring and apnoea.

Someone experiencing these difficulties ends up with poor quality of sleep that can lead to an increased risk of various medical conditions such as heart problems.

HOW DO NASAL POLYPS COME ABOUT?

Nasal polyps are mainly due to the long-standing inflammation or irritation of the mucosa, which is lining cells and layers of the nasal cavity and sinuses.

Such inflammation or irritation is known as chronic rhinosinusitis or CRS.

CRS IS COMMONLY RELATED TO VARIOUS TYPES OF ALLERGIES

Long-standing allergies lead to the formation of multiple large polyps.

The longer the allergy, the more severe the presentation becomes. Consequently, treatment will become more challenging.

Hence, the earlier CRS is detected, the better. When detected early, CRS can be treated promptly with good control of the underlying allergies.

Careful, once the allergies recur, polyps can follow!

HOW CRS IS TREATED

The main goal of treatment of nasal polyps is to reduce the inflammation that causes the polyps.

Once the inflammation is controlled, the polyps will normally shrink in size, especially if it is small or in its early stage.

Steroid Sprays

These sprays remain the first-line treatment to achieve this.

Surgery

The second line for non-responsive cases or bigger polyps would be surgery. See the table for more details.

Surgical options come into play as the first option when the polyps are not allergic in nature, such as antrochoanal polyps or polyps of suspected neoplastic origin.

SURGERY IS OFTEN CONSIDERED IN THE FOLLOWING CIRCUMSTANCES:
  • Worsening symptoms.
  • Progressively enlarging polyps.
  • Recurrent sinus infections.
  • Decreased sense of smell and taste.
  • Breathing difficulties.
  • Sleep disturbances.
  • Worsening asthma attacks.
  • Complications that affect the orbit, which is the bony cavity that contains the eyeball (orbital complications) with, rarely, complications involving the cranium or the skull cavity (intracranial complications).
LET’S TALK ABOUT THE SURGERY
Short Downtime

It is a simple day-care procedure for medically fit patients with no contraindications; they can often return home on the same day.

Otherwise, a slightly longer stay of 2 to 3 days will suffice.

Potential Side Effects

The side effects are minor self-limiting bleed, mild discomfort, crusting, redness, and temporary distorted sensation of smell.

Mechanical injuries to the neighbouring structures, such as the eye and skull base, are uncommon.

Post-surgery Care

Post-surgery care is a highly important determinant of surgical success.

Regular nasal saline irrigation and regular sinus cavity debridement are recommended in early post-operative care interventions.

Post-operative antibiotics and systemic steroids are catered for on a patient-to-patient basis.

Moisture is critical for proper healing. Patients will need to moisturise and douche their nose at least 3 to 4 times a day, and for at least 4 to 6 weeks after surgery.

MONOCLONAL ANTIBODIES ARE A NEWER GROUP OF TREATMENTS FOUND EFFECTIVE FOR RECURRENT POLYPS UNAMENDABLE FOR STEROID AND SURGICAL INTERVENTION

Aspirin-exacerbated respiratory disease (AERD), also known as Samter’s Triad, is a chronic medical condition that consists of three clinical features: asthma, sinus disease with recurrent nasal polyps, and sensitivity to aspirin and other non-steroidal anti-inflammatory drugs.

Monoclonal antibodies show a promising outcome in these cases. However, this treatment involves a longer duration with a higher cost of treatment.

OTHER NON-INVASIVE TREATMENTS AVAILABLE IN MALAYSIA FOR NASAL POLYPS

Oral corticosteroids can be a non-specific consideration for nasal polyps. It is advised to be taken for a short term, bearing in mind the side effects, leading to the recurrence of polyps once suspended.

A newer tool of steroid-impregnated sinus implant is available overseas, but it is still in its early stage of proven effectiveness.

 

A Neurosurgeon Discusses Trigeminal Neuralgia, the ‘Suicide Disease’

WORDS LIM TECK CHOON

FEATURED EXPERT
DR SYED ABDULLAH AL-HADDAD
Consultant Neurosurgeon
Sunway Medical Centre

Trigeminal neuralgia, also known as the ‘suicide disease’ or tic douloureux, is a rare and agonizing condition. While it is considered a rare disease due to its low occurrence among us, it has gained notoriety due to celebrities such as George Clooney and Salma Hayek revealing that they suffer from it.

It is more prevalent among women as well as people over the age of 50.

FACTS ABOUT TRIGERMINAL NEURALGIA
Causes a sudden, intense, stabbing, or electric shock-lain pain in the jaw or face

People with this disease can experience brief bouts of intense pain while carrying out daily activities that involve facial movements, such as chewing, talking, smiling, and more.

Dr Syed Abdullah Al-Haddad reveals that such painful episode can last from a few seconds to several minutes each time.

The pain is recurrent—one could experience a few to even a few hundred such attacks in a day!

He adds: “The intense, electric shock-like one-sided facial pain characteristic of this condition often leads to misinterpretation and misdiagnosis. Patients endure years of debilitating pain with one patient describing it as worse than labour pain.”

Commonly affects one side of the face

These bouts of pain commonly affect only one side of the face (the right side is more common). It is possible for both sides of the face to be affected, but such incidences are rare in an already rare disease.

It’s due to the disruption of the function of the trigeminal nerve

The trigeminal nerve transmits touch and pain sensations from our face and head to our brain.

There are 3 branches in the trigeminal nerve:

  • The ophthalmic branch transmits nerve impulses to the top portion of our face, including our forehead.
  • The maxillary branch transmits nerve impulses to the middle region of the face, including our cheeks, nostrils and upper lip.
  • The mandibular branch transmits nerve impulses to the lower portion of our face, including the lower lip and jaw area.
Causes of trigeminal neuralgia

One of the more common causes is a blood vessel causing pressure on the trigeminal nerve.

Another common possible cause is multiple sclerosis, which causes the myelin sheath, the coating of nerve cells, to break down and put the person with multiple sclerosis at risk of developing trigeminal neuralgia.

Other possible causes include the presence of a tumour or lesion that compresses the nerves and damage to the trigeminal nerve due to surgery, stroke, or injury.

However, it is also possible for some cases of trigeminal neuralgia to have no specific identifiable cause.

It is often misdiagnosed

Due to how it is often misdiagnosed, trigeminal neuralgia can cause those affected to live with the pain for a long time. Dr Syed Abdullah Al-Haddad shares that one of his patients had one whole side of his teeth taken out due to his condition being misdiagnosed as dental pain.

Leaves a profound impact on the lives of those affected by this disease

The disease can make it difficult for those affected to perform daily activities like eating and talking as well as affect their mental health and relationships with their loved ones.

Dr Syed Abdullah Al-Haddad adds: “As they endure the intense pain, some patients decide to stop talking or even living a normal life. The symptoms can also interfere with their ability to work, impact relationships as some believe that sufferers are ‘mad’ or exaggerating their pain and lead to depression and sleep problems.”

DIAGNOSING THE DISEASE

According to Syed Abdullah Al-Haddad, the biggest challenge here is getting an accurate diagnosis.

Frequently, the condition is misdiagnosed as dental problems or issues related to the ear, nose, and throat first.

This is why it is crucial for doctors to listen to their patient’s symptoms and understand the characteristic features of the pain. The pain often described by patients is crucial and can be a sign of the disease.

Trigeminal neuralgia is diagnosed through a combination of patient-reported symptoms as well as a thorough physical examination and a magnetic resonance imaging (MRI) scan to rule out other potential causes such as multiple sclerosis or tumours.

TREATMENT

Treatment options include medications to block pain signals and surgical methods such as stereotactic radiosurgery.

The latter is a non-invasive procedure that delivers focused radiation to the trigeminal nerve root, reducing pain signals with a shorter recovery time and surgery to relieve pressure on the trigeminal nerve.

BE AWARE OF THIS DISEASE

Dr Syed Abdullah Al-Haddad tells us: “With trigeminal neuralgia often being misdiagnosed, it is important for rare diseases such as this one to not only be in the minds of neurologists but all healthcare professionals from general physicians, dental, ENT surgeons to the public alike so these patients can get the help they need and do not need to suffer any longer in silence.”

Patient Advocacy Group MLDA Raises Funds for Treatment of Rare Disease with This Fascinating Wayang Kulit Campaign

WORDS LIM TECK CHOON

FEATURED EXPERT
LEE YEE SENG
President
Malaysian Lysosomal Diseases Association (MLDA)

The Malaysia Lysosomal Diseases Association (MLDA) unveiled its latest fund-raising effort in February—a collaboration with Fusion Wayang Kulit to shine the spotlight on the difficult circumstances faced by people living with lysosomal storage diseases or LSDs.

WHAT IS LYSOSOMAL STORAGE DISEASE?
First, let’s look at the lysosome, a structure within our cell.

It is usually spherical in shape and contains enzymes that helps to break down carbohydrates, lipids, proteins, as well as waste materials from outside and inside the cell and even old or damaged components of cells.

Researchers found that there are more than 60 different enzymes found in our lysosomes.

The enzymes fail to work properly or don’t work at all when one has the disease.

The term ‘lysosomal storage disease’ refers to a group of over 70 rare inherited metabolic disorders that result from defects in lysosomal function.

As the name of the disease suggests, the enzymes inside the lysosomes of people with this disease fail to work properly.

As a result, various products normally broken down will inside accumulate within their cells, and over time, this will lead to damage of tissues and organs in the body, such as the brain. central nervous system, heart, skin, and skeletal system.

The symptoms of lysosomal storage diseases can vary from person to person and are often difficult to diagnose. 

Furthermore, there are only 16 rare disease specialists in Malaysia at the moment, so delays in diagnosis are not unusual.

Treatment of lysosomal storage disease is very expensive.

Enzyme replacement therapy (ERT), which sees the doctor injecting into the patient genetically engineered enzymes in place of the defective lysosomal ones, often costs more than RM500,000 a year.

The patient’s expenses can increase further depending on the specific rare disease and their unique needs.

Given the constraints of government-based funding, with minimal annual increments, many people with this disease find themselves in need of financial assistance from diverse sources to cover the expenses of ERT.

Additionally, there are the associated costs of supportive therapies such as physical therapy, pain management, dialysis, and more.

THE MALAYSIAN LYSOSOMAL DISEASES ASSOCIATION (MLDA) AS THE VOICE OF PEOPLE WITH THE DISEASE

“MLDA serves as a voice for patients with LSD as they, together with their families and caregivers, have limited information and resources to cope with managing these conditions,” says Lee Yee Seng, the President of MLDA.

“Few people understand the challenges of raising a child with LSD or how symptoms can severely affect a patient’s independence and quality of life,” he adds.

With regards to the high cost of ERT, he states: “Treatment with ERT is essential to keep their condition from getting worse, relieve symptoms and prolong their lifespan. This is why we are determined in our mission to raise awareness about these conditions and help provide financial support through sponsorships and fund-raising efforts like these.”

RAISING HOPE & FUNDS THROUGH ARTISTRY & BEAUTY

This year, MLDA and Fusion Wayang Kulit have embarked on a first-of-its-kind ambitious project to share patient-inspired stories through the traditional art of shadow play or wayang kulit, but with a modern touch.

Each tale depicts a different aspect of how people with LSDs and their families are affected, from social isolation and loneliness, the despair parents feel when faced with their child’s suffering, to the uphill battle in search of the right diagnosis and the financial burden of treatment.

“We hope that these stories will resonate with all Malaysians, who can surely relate to the pain and suffering of these patients, that they will be inspired to support our mission in any way they can,” says Lee.

WATCH & REACH OUT

All links open in a new tab.

A Nephrologist Answers Your Questions About Organ Transplant

WORDS DR MUHAMMAD IQBAL ABDUL HAFIDZ

FEATURED EXPERT
DR MUHAMMAD IQBAL ABDUL HAFIDZ
Head of the Nephrology Unit and Kidney Transplant Programme
Universiti Teknologi MARA (UiTM)
QUESTION 1
Considering the advances made in dialysis technology, why is kidney transplant still considered a necessity for people with end stage kidney disease?

Kidney transplantation is generally regarded as the optimal treatment endpoint for individuals with end stage kidney disease.

This is because it offers superior long-term outcomes, improved quality of life, and reduced health risks.

Patients can lead a life like the one before they underwent dialysis.

However, it’s essential to consider individual eligibility and specific medical circumstances when determining whether the individual is suitable to receive a kidney transplant.

QUESTION 2
What are the likely reasons that make many Malaysians hesitate to donate their organs?

Such hesitancy could be due to cultural and religious beliefs, lack of awareness about the benefits and importance of organ donation, concerns about the healthcare system’s transparency, and potential family influences on their decision-making.

QUESTION 3
What are some of the common misconceptions that Malaysians harbour about organ donation?

Common misconceptions include:

  • Fears about the impact on the body after death.
  • Concerns about the fairness of organ allocation.
  • Lack of trust in the healthcare system.
  • Misunderstandings about the compatibility of organ donation with cultural or religious beliefs.

Education is crucial to dispel these myths.

QUESTION 4
What are the criteria for one to be eligible to be an organ donor?

Eligibility criteria for organ donation include:

  • Being in good general health.
  • Typically, under the age of 70.
  • Have no active infections or severe medical conditions.
  • Donor meets specific organ-specific criteria.

It’s essential for potential donors to discuss their intentions with their immediate family and register as donors to ensure their wishes are known and considered.

QUESTION 5
How do we register as an organ donor?

You can register as an organ donor through the MySejahtera app.

It is very simple to do. All you need to do is ensure that the next of kin is informed, which is part of the registration itself.

Once you complete the registration, the donor card will appear on the MySejahtera app.

If you change your mind later about being an organ pledger, you can make the necessary changes via the app at any time after you have registered.

Malaysia’s First Women Ophthalmology Forum Commemorates International Women’s Day

WORDS LIM TECK CHOON

On 7 March 2024 Roche Malaysia Sdn Bhd launched the inaugural Empowering Visions: Malaysia Women Ophthalmology Forum in conjunction with International Women’s Day.

Moderated by talk show host Freda Liu, the forum featured the following prominent panelists:

  • Datuk Dr Nor Fariza Ngah, Deputy Director of Health, Research & Technical Support
  • Dr Tara Mary George, a consultant ophthalmologist
  • Dr Shamala Retnasabapathy, a consultant ophthalmologist

The panelists covered a multitude of relevant topics such as breaking barriers and overcoming stereotypes, patient care, the importance of interpersonal skills, the significance of continuous education as well as the professional development of women in the medical profession.

WOMEN BRING VALUE THAT CAN ELEVATE THE MEDICAL PROFESSION

According to Datuk Dr Nor Fariza, women bring a distinct perspective that enriches the profession and elevates patient care.

“In a domain where empathy, communication, and meticulousness reign supreme, women’s inherent strengths make them indispensable contributors,” she said during the forum.

She added: “Moreover, diverse representation ensures healthcare systems are attuned to the varied needs of patients, including those specific to women. By championing and empowering women in ophthalmology and healthcare at large, we not only advance gender equality but also enhance the caliber and efficacy of healthcare provision for all.”

A COMPASSIONATE APPROACH TO OPHTHALMOLOGY

Dr Tara Mary George said: “It is the compassionate approach commonly associated with us women which can significantly enhance patient care. Through empathetic communication and understanding, we can alleviate fears, clarify treatment plans, address patient concerns with as much sensitivity and understanding as possible, and cultivate a supportive environment where patients feel valued and heard.”

FAMILY SUPPORT VITAL FOR WORK-LIFE BALANCE

This key point was brought up by Dr Shamala Retnasabapathy, who said, “The supportive role of family is pivotal in achieving work-life balance, contributing to the empowerment of women in their professional endeavors.”

For her fellow women in the field of ophthalmology, she advised no to neglect continuous education and professional development, as these are essential when it comes to staying abreast of the latest advancements.

“This is another way of showcasing our commitment to providing the highest standard of care to their patients while contributing to the advancement of the field as a whole—and how we pave the way for greater inclusivity, diversity, and progress within the profession,” she added.

AN INITIATIVE TO CHAMPION DIVERSITY & INCLUSION

Choong Mei Chen, who is the Ophthalmology Country Disease Area Lead for Roche Malaysia, Vietnam, Philippines and Indonesia, told us that initiatives such as the Empowering Visions: Malaysia Women Ophthalmology Forum send a resounding message of support and empowerment.

“Together, let us boldly challenge the status quo, dismantle barriers, and pave the way for a future where every individual, regardless of gender, enjoys equal opportunities to excel!” she said.

5 Useful Tips for Employers to Support their Employees’ Efforts to Fast Safely and Healthily This Ramadan

WORDS LIM TECK CHOON

FEATURED EXPERT
DR CHAN YANJUN
Medical Director, Singapore & Malaysia Assistance Centres
International SOS

As we enter the fasting month today, Dr Chan Yanjun has some valuable tips to share with those that will be embarking on their fast.

“During the holy month of Ramadan, while many find it a time for spiritual reflection and growth, it is important to acknowledge that the changes in routine and physical demands of fasting can impact on employees’ mental and physical wellbeing,” she says.

Tip 1
FOSTER AN OPEN ENVIRONMENT

Encourage open communication by having a clear and inclusive policy on religious observance in the workplace. This demonstrates respect for employees’ personal beliefs and allows them to comfortable discuss their needs during Ramadan.

Tip 2
ENSURE THAT YOUR EMPLOYEES ARE PRIORITIZING THEIR HEALTH & WELLBEING

Remind employees to stagger their hydration during non-fasting hours and to consume nutrient-rich meals during Sahur and Iftar.

Rehydration should be a cumulative process. The best way to rehydrate fasting bodies and maintain this hydration for longer is to pace one’s liquid intake by consuming at least two litres of water—one or two glasses at a time— between Iftar and Imsak.

Quality sleep is also vital for maintaining energy levels, mental clarity, and focus, all crucial for workplace performance.

Tip 3
PROMOTE FLEXIBLE WORKING ARRANGEMENTS

Consider offering flexible working arrangements, such as adjusted start and finish times to accommodate individual needs.

Additionally, be understanding if employees require more breaks or need to adjust their break timings for prayers.

Tip 4
OFFER EMPLOYEES THE RESOURCES & INFORMATION ABOUT HEALTHY PRACTICES DURING RAMADAN

These resources can include recommended dietary guidelines or tips for maintaining energy levels while fasting. The provision of these resources will empower employees to make informed choices during this important time.

Tip 5
PROVIDE MENTAL HEALTH SUPPORT

Encourage employees to utilise mental health resources offered by the organization, such as Employee Assistance Programmes (EAPs), or provide information about external resources for stress management and emotional support.

New Treatment for Both Acute Treatment of Migraine and Prophylactic Treatment of Episodic Migraine Now Available!

WORDS LIM TECK CHOON

FEATURED EXPERT
DR JULIA SHAHNAZ MERICAN
Consultant Neurologist
Prince Court Medical Centre

Recently, pharmaceutical company Pfizer Malaysia announced the availability of NURTEC™ (rimegepant) in Malaysia.

WHAT IS IT FOR?

Well, it’s a prescription medication designed to treat acute migraine and prevent migraine attacks.

MORE ABOUT MIGRAINE

Dr Julia Shahnaz Merican shares that migraine can present itself with or without aura.

Those suffering from migraine with aura tend to experience visual disturbances such as dots, sparks or zigzags before a migraine attack.

These visual disturbances are absent in migraine without aura, which is the more common type of migraine.

“Regardless of the type, migraines significantly disrupt one’s quality of life, often forcing patients to seek solace in a dark room until the pain and symptoms subside,” Dr Julia says.

HOW DOES THIS MEDICATION WORK?

“While the exact cause of migraine remains a mystery, over the past 30 years, clinical and preclinical studies have investigated the role of a neuropeptide called calcitonin gene-related peptide (CGRP) in migraine occurrence,” Dr Julia reveals.

NURTEC™ works as a CGRP receptor antagonist.

What this means is that it can act to block the effects of CGRP, thus helping to provide pain relief during migraine attacks.

Furthermore, this medication has received approval for use in reducing the frequency of future migraine attacks when used preventively.

NURTEC™ is for oral use and is currently available in Malaysia. It is a prescription medicine, which means you will need a doctor’s prescription to obtain it. If you believe that you may benefit from this medication, please discuss this matter further with your doctor.

Reference: Pfizer Malaysia Sdn Bhd. (2024, January 18). NURTEC™ (rimegepant) is now available in Malaysia for both acute treatment of migraine and prophylactic treatment of episodic migraine [Press release, KKLIU 0244 / EXP 15.07.2024].