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Multiple Sclerosis Society of India (MSSI) – Bengaluru Chapter, in collaboration with the Rotary Action Group Against Multiple Sclerosis (RAGAMS), hosted an awareness and advocacy programme titled "Navigating MS Together."
The initiative brought together neurologists, government representatives, Rotary leaders, caregivers and people living with multiple sclerosis (PwMS) to highlight the need for greater visibility, with a focus on dignified living and systemic support for MS care in India.
The programme facilitated in-depth discussions on the evolving multiple sclerosis landscape, spanning challenges in early diagnosis, access to care, disability recognition and long-term disease management. Discussions also focused on advances in treatment approaches, including high-efficacy therapies (HETs), which are increasingly recognised for their potential to slow disease progression and preserve the quality of life when initiated early.
To help participants better understand the lived realities of MS, experiential zones were set up as part of the Walk In My Shoes campaign, offering a first-hand perspective on the physical, cognitive and sensory challenges that people with MS navigate daily.
Arun Mohan, vice president, MSSI India, said, “The entire MS ecosystem is riddled with challenges. From dearth of accurate disease prevalence data and inadequate insurance coverage, to lack of clear disability assessment guidelines and insufficient number of specialists treating MS. Early Induction of high efficacy therapies reduces the need for multiple hospital visits, rehabilitation and long-term care, thereby easing pressure on the health system and freeing up infrastructure. The goal in treating MS should primarily be to slow disease progression, halt disability while also having a more convenient dosing schedule that leads to better treatment adherence, better quality of life with less disruption to work, education or family responsibilities. The Walk In My Shoes campaign is a step forward in this direction."
Shankar Subramanian, chairperson, Rotary Action Group Against Multiple Sclerosis (RAGAMS), India Chapter, said, “Multiple Sclerosis is often called an invisible illness, unknown to the public eye, yet, its impact on individuals and families is constant and deeply disruptive. Through initiatives like Navigating MS Together and the Walk In My Shoes campaign, we aim to foster greater understanding of the daily challenges faced by people living with MS. Advocacy, awareness and collaboration with patient groups, clinicians and policymakers are essential to building a more inclusive and responsive support system, where no one has to face this journey in isolation.”
Dr Rajesh Iyer, senior consultant neurologist, Poorna Neuro Superspecialty Clinics & Honorary Consultant MSSI, Bengaluru, said, “Multiple sclerosis is a tough neurological disease to manage. The disease predominantly affects young adults and can lead to significant disabilities at the prime of their lives if diagnosis and treatment are delayed. About half the MSPs are at risk of becoming wheelchair bound in 15 years if inadequately treated. Moreover, the life expectancy of MSPs in India is lesser compared to western countries. However, with better understanding of the disease and the advent of newer high efficacy therapies, most MSPs can lead normal lives without disabilities. In India, raising awareness, reducing diagnostic delays and ensuring 100% access to high efficacy treatments must become a national priority if we are to help MSPs preserve independence, remain active, and lead fuller lives”.
With over 2 lakh people estimated to be living with MS in India, most between the ages of 20 and 40, the programme reiterated the urgent need for standard-of-care guidelines and updated disability assessment frameworks that recognise invisible symptoms and the relapsing-remitting nature of the disease.
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