An uneventful passing of World Multiple Sclerosis Day on 30 May was bit disappointing, given that for the first time Government had turned its attention to this horrifying disease was only last year.
Perhaps because the incumbent government deployed all its ministerial machinery into a do or die heated election battle, there was little time left for this suffering section of society. One hopes the new government will continue the trend that started last year.
Multiple Sclerosis (MS), which means multiple scars, is a chronic autoimmune disease that attacks and scars the brain and the spinal cord and central nervous system, leading to a wide range of neurological symptoms. In this the immune system attacks the protective sheath of nerves in the body which can be quite debilitating as well as excruciatingly painful to the patient.
The resulting nerve damage disrupts communication between the brain and the body with symptoms such as vision loss, pain, weakness of limbs, fatigue and impaired coordination. It can be passed to children through genes so genetic test of children to determine vulnerability and earlier preventive measures is must.
There is an increase in number in India, which is primarily because there are more number of cases being reported these day with improved diagnostic facilities. With prevalence between 5 to 20 per 100,000 individuals, India has still a very low level of incidence of MS compared to countries in North America and Europe, where prevalence rates can exceed 100 per 100,000.
MS typically affects young adults, with the onset of symptoms commonly occurring between the ages of 20 and 40. In India, the average age of onset is similar, with most diagnoses occurring in the second and third decades of life.
MS affects women more frequently than men, with a female-to-male ratio of approximately two to three women as opposed to one man. This gender disparity is consistent with global trends and is thought to be influenced by hormonal and genetic factors. Urban areas tend to have higher reported cases than rural regions.
There is genetic predisposition for MS. Individuals with a family history of MS are at a higher risk. Certain genetic markers have been associated with an increased susceptibility to MS.
Environmental factors, including low sunlight exposure and vitamin D deficiency, are believed to contribute to the risk of developing MS. India, being a tropical country, might have lower rates due to higher sunlight exposure, although urbanization and lifestyle changes could make us more prone.
Certain viral infections, particularly the Epstein-Barr virus, have been implicated in the development of MS. It is believed that this virus triggers an autoimmune response in genetically predisposed individuals.
The most despairing part of this disease is patient rapidly gets socially isolated. To address this the Ministry of Social Justice & Empowerment had started MS Connections campaign organised for the World Multiple Sclerosis Day. The buildings were lit up in orange because the theme colour of MS Day is Orange. Not sure if the buildings were lit up in orange this time too.
Last year, the Government’s theme for World MS Day has been “MS Connections” — a campaign which is all about building community connection, self-connection and connections to quality care. MS Connections challenges social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better services, celebrate support networks and champion self-care.
The Department of Empowerment of Persons with Disabilities organized events at more than 40 places across India to spread awareness about the disease for which there is no complete cure, yet, only management. However, many individuals can achieve significant improvements in quality of life and functional abilities with proper management.
Indian scientists at Institute of Advanced Study in Science and Technology, Guwahati, have fabricated monolayers of pure myelin basic protein (MBP), a major protein component of myelin sheath, which is a protective membrane that wraps around the axon of nerve cells and acts as a model protein in studying multiple sclerosis (MS). MBP helps in compactification of the myelin sheath that protects the inner nerve.
Multiple Sclerosis treatment in India is evolving, with several top-tier hospitals and specialized centres offering comprehensive care. While the cost of treatment can be high, the availability of disease-modifying therapies (DMTs) and symptomatic treatments can significantly improve patient outcomes.
Complete recovery in terms of a cure is not currently possible, but with proper management, many individuals with MS can achieve a good quality of life. More research, continued improvements in healthcare access and affordability are essential to better address the needs of MS patients in India. A policy level support by Government is very crucial here.
