On 12th June, at ICTRIMS 2026, MSSI Pune Chapter presented a session that we believe reflects exactly where MS advocacy in India needs to go: “Beyond the walls of clinic”
“MS Beyond the Walls of Clinic” brought together three Persons with MS, five neurologists, including Chair Prof. Benedetta Bodini (Sorbonne University, Paris Brain Institute), and patient-reported data from 65 PwMS across India.
MSSI extracted information from the World MS Day 2025 Poster Makers conducted by the MS International Federation (MSIF) and analysed responses from 65 people living with Multiple Sclerosis (PwMS) in India,
Key findings from the barriers to MS Diagnosis from World MS Day Posters, 2025:
- 35% of respondents waited 2+ years for an MS diagnosis
- 26% waited 3+ years
- The longest recorded delay: 13 years
- Fatigue, sensory issues & cognitive fog, the most commonly dismissed symptoms, were among the top first presentations
The session also saw the formal launch of the MSSI MS Symptom Card – a pocket-sized IEC tool listing all MS symptoms, including invisible ones, designed to bridge the gap between patient experience and clinical language.
Dr Ichhaporia, the organising Chairman of ICTRIMS and the Founder Chairperson of MSSI Pune, reminded us that MSSI Pune started with just two people. Today, it stands as a community, a voice, and a movement.
Thank you to every panellist, every PwMS who shared their story, and every doctor who listened.
Early diagnosis saves lives. Every delay is a missed window for treatment.
