01 June,2026 04:59 PM IST | Mumbai | mid-day online correspondent
Every year, World Multiple Sclerosis Day is observed on May 30. Image for representational purpose only. Photo Courtesy: File pic
Multiple Sclerosis remains poorly understood in India and many patients spend years with unexplained neurological symptoms before they get a diagnosis.
The condition can impact movement, vision, balance and even control over bladder function, often disrupting the most productive years of patient's life.
While India is considered a low prevalence region for MS, studies estimate that approximately 5-20 people per 100,000 population may be living with the condition. However, experts believe the true burden is most likely underreported due to limited nationwide epidemiological data.
Every 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 body.
Neurologists 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 - years associated with higher education, employment, financial responsibilities and independent living.
Despite 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 "Person with Disability" (PwD) within disability rights frameworks. However, this threshold can unintentionally overlook the significant challenges faced by individuals living with MS, whose day-to-day 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 disability-related accommodations.
"One of the less understood aspects of Multiple Sclerosis is that many of its most disabling symptoms remain invisible," says Dr Varsha A. Patil, MD, DNB, DM (Neurology), Consultant Neurologist, Bombay Hospital and Medical Research Centre, Mumbai. "Fatigue, brain fog, memory problems, neuropathic pain, bladder dysfunction and visual disturbances can significantly hinder a person's ability to work, engage socially, manage responsibilities and fully participate in everyday activities."
She adds, "Because 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 long-term outcomes and quality of life."
One 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 point.
"At 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 bladder-related issues. It was an experience I would not wish on anyone," he recalls.
"Because 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 treatment."
Gupta says the disease drastically altered the course of his life. "I 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 MBA."
Today, while his condition has improved with treatment and physiotherapy, many invisible challenges persist.
"I 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 quickly," he says.
Patients 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 MS.
"When 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 face," Gupta shares.
Delayed diagnosis is one of the biggest concerns in India, according to experts, as early symptoms are often mistaken for stress, fatigue, migraine, or vertigo.
One of the biggest challenges in MS care continues to be the gap between the onset of symptoms and diagnosis," says Dr. Arun B Shah, Director of Neurosciences, Sir H N Reliance Foundation Hospital, Consultant Neurologist, Breach Candy Trust Hospital. "Many of the early symptoms are often subtle and non-specific, and because they overlap with more common health concerns, patients frequently navigate multiple consultations before eventually reaching a neurologist."
He adds, "But 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 time."
Historically, 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 long-term outcomes when they are started early.
"Earlier diagnosis and timely intervention are significantly changing long-term outcomes in Multiple Sclerosis today," says Dr Shah. "Increasing evidence shows that early initiation of high-efficacy therapies can help slow disease progression, reduce relapses and preserve long-term neurological function."
For Gupta, rehabilitation and support systems played a crucial role in helping him regain independence.
"The 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 run," he says.
He now hopes awareness around MS improves, particularly around invisible disabilities and accessibility needs.
"MS people face a lot of difficulty with staircases. I would request the government to to ensure wheelchair facilities everywhere," he says.
Despite the challenges, Gupta remains hopeful. "I want to tell everyone not to be afraid of MS. Nothing is impossible. Everything is possible in the context of living with MS." He has not had any problems for the past 11-12 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 self-confidence.
As awareness of Multiple Sclerosis increases in India, experts highlight the need for earlier diagnosis, better recognition of invisible disabilities, and improved access to long-term neurological care and rehabilitation support.
For individuals living with MS, prompt treatment and a clearer understanding of the condition can greatly help maintain independence, mobility, and quality of life.
Although 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.
