Multiple sclerosis (MS), a complex neurological disease, affects 2.9 million people worldwide, with an average of 300 people diagnosed globally every day. In South Africa, its true extent remains unknown; the disease may be more prevalent than previously thought.
This is according to local neurologist Dr Natanya Fourie, who notes that a lack of comprehensive data and awareness means there may be many more undiagnosed or misdiagnosed sufferers with MS than realised. This is particularly concerning, as the number of cases appears to be increasing.
Dr Fourie has partnered with pharmaceutical company Novartis South Africa and patient support organisation Multiple Sclerosis South Africa (MSSA) to raise awareness of this condition, hoping his campaign will advocate for early and accurate diagnosis.
Early diagnosis is critical in managing the disease and improving treatment outcomes. “The sooner we make the diagnosis, the better the long-term outcome will be,” she says.
Early diagnosis and treatment can significantly improve a patient’s quality of life, enabling them to lead a more normal lifestyle and potentially extending their life expectancy; while delayed diagnosis and treatment invariably result in a poorer outcome, often marked by significant impairment in mobility. Consequently, prognosis worsens when diagnosis and treatment are delayed.
Challenges in diagnosing multiple sclerosis
Dr Fourie explains that MS is a chronic autoimmune disease that affects the optic nerves and the central nervous system, which is made up of the brain and spinal cord, and can result in a wide variety of symptoms. Fatigue is frequently identified as the most common symptom of MS, alongside various other symptoms such as visual, motor, sensory and balance issues. Early referral to a neurologist is imperative and can have meaningful impact for the patient.
The disease is more common in females and is often diagnosed between the ages of 20 and 40 years. “We see more and more children being diagnosed, so it can occur at any age,” adds Dr Fourie. This is a critical issue, as many paediatric neurologists are not trained to identify and treat MS, owing to its relative rarity among children.
She says that differences in MS frequency among racial groups can lead to diagnostic delays, as healthcare providers may overlook MS as a potential cause in groups where it’s rare.
Non Helena Smit, director of MSSA, emphasises that enhanced research and data on the epidemiology of MS in South Africa are crucial for strengthening advocacy efforts aimed at increasing affordable access to treatment and care. “According to our information, the prevalence varies across different ethnic groups and age demographics, and we need a lot more research and studies to better understand these patterns.”
MSSA is extensively involved in lobbying on behalf of MS patients, seeking to highlight the global and the national barriers to healthcare; build informed, caring communities for MS patients; raise awareness of the disease, its symptoms and its impacts; advocate for better MS training and research; provide resources and support for MS patients; and even reduce the financial burden of the disease on patients and their families.
Campaigning, awareness and advocacy efforts by groups such as MSSA – along with its partnerships with government agencies, healthcare providers and pharmaceutical companies such as Novartis South Africa – help spread information about the disease, and ensure individuals receive the correct support.
“Partnering with pharmaceutical companies operating in the MS space in South Africa in terms of advocating for access to affordable treatment, collaborating on patient assistance programmes and, in general, to put the patient first is a priority. We work closely with healthcare providers to ensure the patients receive appropriate care and support by providing educational resources and organised training sessions,” concludes Smit.
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