World Multiple Sclerosis Day 2026: Why the chronic autoimmune disease remains poorly understood in India

Multiple Sclerosis remains poorly understood in India and many patients spend years with unexplained neurological symptoms before they get a diagnosisThe condition can impact movement vision balance and even control over bladder function often disrupting the most productive years of patientrsquos lifeWhile India is considered a low prevalence region for MS studies estimate that approximately 520 people per 100000 population may be living with the condition However experts believe the true burden is most likely underreported due to limited nationwide epidemiological dataEvery year World Multiple Sclerosis Day is observed on May 30 around the globe to raise awareness about the disease Multiple Sclerosis popularly called MS is a chronic autoimmune disease in which the immune system attacks the brain and spinal cord disrupting communication between the brain and bodyNeurologists say the diagnoses have been on the rise steadily over the past decade especially in urban centres where access to MRI imaging and neurological care has improved An average age of MS onset in India is usually between 20 and 40 years ndash years associated with higher education employment financial responsibilities and independent livingA disease often hidden in plain sightDespite the increasing burden awareness of MS is low in India especially since many of its symptoms are not visible and fluctuate over time The 40 per cent disability benchmark under the Rights of Persons with Disabilities Act 2016 serves as the minimum legal threshold for recognition as a ldquoPerson with Disabilityrdquo PwD within disability rights frameworks However this threshold can unintentionally overlook the significant challenges faced by individuals living with MS whose daytoday burden may not always be reflected through measurable percentages alone As a result people living with MS are frequently misunderstood and may struggle to access recognition workplace support and disabilityrelated accommodationsldquoOne of the less understood aspects of Multiple Sclerosis is that many of its most disabling symptoms remain invisiblerdquo says Dr Varsha A Patil MD DNB DM Neurology Consultant Neurologist Bombay Hospital and Medical Research Centre Mumbai ldquoFatigue brain fog memory problems neuropathic pain bladder dysfunction and visual disturbances can significantly hinder a personrsquos ability to work engage socially manage responsibilities and fully participate in everyday activitiesrdquoShe adds ldquoBecause many of these symptoms are episodic variable or invisible the impact of the disease is often underestimated by those around them Yet MS disease activity can continue even when symptoms appear intermittent or mild which is why timely diagnosis and early initiation of appropriate therapy can meaningfully influence longterm outcomes and quality of liferdquoLiving With MS Meet a Mumbaikar living with the diseaseOne such person living with the condition is Rahul Gupta from Mumbai who currently works as a computer assistant at an NGO He was diagnosed with Multiple Sclerosis MS in 2003 after repeated attacks had left him bedridden at one pointldquoAt that time I could not even walk My condition worsened to the extent that I became completely bedridden My primary caregiver was my father who supported me through everything including helping me manage bladderrelated issues It was an experience I would not wish on anyonerdquo he recallsldquoBecause of MS I had to be hospitalised not once or twice but four times I also had to visit the hospital every month for three consecutive days to undergo treatmentrdquoGupta says the disease drastically altered the course of his life ldquoI wanted to study medicine and become a doctor but that dream could not materialise Due to MS I had to discontinue my studies midway Later through a correspondence course I completed my MBArdquoToday while his condition has improved with treatment and physiotherapy many invisible challenges persistldquoI continue to face bladder issues Climbing stairs is difficult because of weakness in my legs which slows me down significantly I also experience fatigue very quicklyrdquo he saysThe struggle of invisible disabilityPatients say one of the hardest aspects of MS is having to constantly explain a disability that others cannot see The policy frameworks that need to be adapted to cover MSldquoWhen I went for a disability certificate people asked me why I need one because I could walk and move around But only an MS patient can understand how much trouble we facerdquo Gupta sharesDelayed diagnosis is one of the biggest concerns in India according to experts as early symptoms are often mistaken for stress fatigue migraine or vertigoOne of the biggest challenges in MS care continues to be the gap between the onset of symptoms and diagnosisrdquo says Dr Arun B Shah Director of Neurosciences Sir H N Reliance Foundation Hospital Consultant Neurologist Breach Candy Trust Hospital ldquoMany of the early symptoms are often subtle and nonspecific and because they overlap with more common health concerns patients frequently navigate multiple consultations before eventually reaching a neurologistHe adds ldquoBut multiple sclerosis is not a condition that waits for patients to find answers Disease activity may continue despite apparently intermittent or mild symptoms and central nervous system inflammation can cause permanent neurological damage over timerdquoWhy early treatment mattersHistorically the care has focused on treating relapses after they happen High Efficacy Therapies HETs are helping people to have fewer relapses delay disability progression and have better longterm outcomes when they are started earlyldquoEarlier diagnosis and timely intervention are significantly changing longterm outcomes in Multiple Sclerosis todayrdquo says Dr Shah ldquoIncreasing evidence shows that early initiation of highefficacy therapies can help slow disease progression reduce relapses and preserve longterm neurological functionrdquoRehabilitation and recoveryFor Gupta rehabilitation and support systems played a crucial role in helping him regain independenceldquoThe physiotherapist used to make me do exercises for one to two hours daily And slowly with treatment and physiotherapy I started to get up sit move my leg Over time one step at a time I was able to stand then walk and eventually runrdquo he saysHe now hopes awareness around MS improves particularly around invisible disabilities and accessibility needsldquoMS people face a lot of difficulty with staircases I would request the government to to ensure wheelchair facilities everywhererdquo he saysDespite the challenges Gupta remains hopeful ldquoI want to tell everyone not to be afraid of MS Nothing is impossible Everything is possible in the context of living with MSrdquo He has not had any problems for the past 1112 years He is extremely thankful to MSSI for helping him with his computer education as it helped him pursue his current career as well as gain a sense of selfconfidenceLooking aheadAs awareness of Multiple Sclerosis increases in India experts highlight the need for earlier diagnosis better recognition of invisible disabilities and improved access to longterm neurological care and rehabilitation supportFor individuals living with MS prompt treatment and a clearer understanding of the condition can greatly help maintain independence mobility and quality of lifeAlthough the challenges of living with MS are considerable improvements in treatment and changing care methods are enabling many patients to lead fuller more independent lives