It’s been called an invisible or silent disease – the symptoms of Multiple Sclerosis are not always obvious, but the disease can cut short the life ambitions of young, economically active people – however, earlier diagnosis and better access to treatment can offer better quality of life to those affected by a disease for which there is no cure.
This year’s World Brain Day on 22 July is themed “Stop Multiple Sclerosis”, aiming to raise awareness of the debilitating neurological disease that impacts every aspect of a person’s life, with effects ranging from cognitive impairment to severe physical disability. Multiple sclerosis (MS) is an immune-mediated disease, one of the most common diseases of the brain and spinal cord (central nervous system) and affects more than 2.8 million people of all ages around the world, approximately 36 in 100 000 people.
Although the prevalence of MS in South Africa has not been sufficiently researched, the MS World Atlas 2020 estimates it at 8 per 100 000 people.
Pretoria neurologist Dr Chris Retief, who co-authored the South African guidelines for diagnosis and management of MS, said the disease afflicts predominantly young, economically active people, with 32 the average age of diagnosis globally. It is the most important cause of neurological disability in people under the age of 60.
The Neurological Association of South Africa (NASA) is collaborating with the World Federation of Neurology (WFN) and the MS International Federation (MSIF) on World Brain Day 2021, aiming to raise awareness so that MS can be diagnosed earlier, promoting better access to life-changing treatments, and advocating for improved quality of life for those living with MS and their caregivers. “Every five minutes, someone somewhere in the world, receives the life-altering diagnosis of multiple sclerosis, so the urgency of this matter could not be more apparent,” said Prof Tissa Wijeratne, the World Brain Day chair and Director of the Neuroscience Research Unit at Western Hospital in Melbourne, Australia. “More than 2.8 million people of all ages live with multiple sclerosis around the world, and every one of those people has a story, friends, family and dreams,” says WFN President Prof William Carroll. “Our goal is to raise awareness of multiple sclerosis and its impact on the individuals who live with it, their loved ones and society to improve access to quality neurological care and life-changing treatments.”
What is multiple sclerosis?
Multiple sclerosis is characterised by inflammation and damage to myelin, the coating that insulates and protects the nerves. MS inflammation involves the brain, spinal cord and optic nerves. This inflammation typically results in episodes of neurological disability (called relapses), including visual loss, incoordination, walking impairment, weakness or paralysis of a limb, loss of sensation, loss of control of the bladder and also impairment of mental functions.
Cognitive or mental impairment includes difficulties in thinking, concentration and memory. The inflammation may also be mild but ongoing, resulting in mild unrecognized relapses, or silent gradual deterioration. MS also includes an assortment of “invisible” symptoms including fatigue, pain, cognitive and emotional issues. The precise trigger of inflammation is unknown, although research clearly implicates abnormal behavior of B-lymphocytes. Epstein Barr Virus, (commonly known as the cause of glandular fever), is strongly suspected to trigger the MS immune cascade, especially if contracted after childhood.
What is the impact?
Dr Retief further explains: “Relapses are characteristic of the initial or early phase of the disease. Treatment of a relapse consists of high dose steroids administered through a drip over a few days. Initially the relapses actually resolve quite well, perhaps giving one a false sense of security that the disease can easily be kept under control with only steroids.” However, if the disease is not treated more intensively, the abnormal B-cells can become clustered in the brain, resulting in chronic continuous inflammation. This is called secondary progressive MS, which leads to progressive disability. Hence, it is vitally important to attempt to prevent or at least delay this phase of the disease.
“It is important to appreciate the concept of neurological reserve. Children and young people have enormous neurological reserve, and generally recover very well from a neurological insult such as a head injury or a MS relapse. Unfortunately, recurrent relapses and silent ongoing inflammation deplete this neurological reserve and leave the patient disabled in middle age when their professional demands and family responsibilities are greatest.“In short: untreated MS makes a patient’s brain grow old a lot faster,” Dr Retief said. MS must be recognized and treated early, even if the person feels well in the beginning, he advised.
What can we do?
Dr Retief said that 25 years ago, there was no treatment for MS, and up to 10 years ago only one tier of treatment was available. “In 2021, fortunately, we have several treatment modalities,” he said. These range from immunomodulators (which change the immune system, but are very safe to use), immunosuppressive medications (suppresses the immune system), lymphocyte sequestrators (prevents the abnormal B-lymphocytes from entering the brain), immune reconstitution therapies (resets the immune system for a number of years), to bone marrow transplantation (the immune system is eradicated, and replaced). The more recent treatments are very effective. However, even after bone marrow transplantation, about a third of people develop symptoms again after 5 years, he said.
NASA President, Dr Patty Francis highlighted the need for patient advocacy. “The unseen symptoms of fatigue, depression, chronic pain, subtle mental difficulties, impaired bladder and bowel control, and sexual dysfunction are often the most disabling. People with MS hate hearing the words: ‘but you look so good!’. They may look good, but they feel horrible. “Simply going by the physical may cause doctors to undertreat patients, employers and insurance companies to not accommodate people adequately, and medical funders to be reluctant to pay for the required medication,” Dr Francis said.
As part of the World Brain Day 2021 campaign, NASA, WFN and the MS International Federation invite patients with multiple sclerosis, their loved ones, healthcare providers, multiple sclerosis organisations and the public to join in and raise awareness of multiple sclerosis through the use of the hashtag #WorldBrainDay2021.
To learn more about multiple sclerosis and to participate in the global awareness activities, please visit https://wfneurology.org/world-brain-day-2021 World Federation of Neurology. World Brain Day 2021. REFERENCES 1. https://wfneurology.org/world-brain-day-2021 2. Multiple Sclerosis International Foundation (MSIF) Atlas of MS 2020. https://www.msif.org/news/2020/09/11/the-atlas-of-ms-is-live/ 3. MSIF. Atlas of MS 2020. https://www.atlasofms.org/map/global/epidemiology/number-of-people-with-ms 4. MSIF. Atlas of MS 2020.