Does the Label Given to My MS Disease Course Matter?

About this episode

The episode discusses the significance of disease labels in multiple sclerosis and their impact on patients' lived experiences.

How much do the labels used to describe multiple sclerosis actually reflect the lived experience of people affected by the disease? In this first episode of the new ECTRIMS–MS Journal collaboration series , host Dr. Anneke van der Walt , Controversies Editor at the Multiple Sclerosis Journal , speaks with Jon Strum , MS caregiver and host of the RealTalk MS podcast, and Kathryn Smith , patient advocate and volunteer with the National MS Society, and person living with MS. Together they explore a deceptively simple question: does the label given to an MS disease course actually matter? Jon argues that disease labels shape perception, communication and expectations for people living with MS and their families. Kathryn explains why those same labels increasingly fail to capture the day-to-day reality of living with the disease. They discuss: Why traditional MS disease course labels can feel disconnected from lived experience The emotional and practical impact of terms such as relapsing-remitting and secondary progressive The concept of PIRA (progression independent of relapse activity) and what it reveals about MS progression Why functional outcomes and patient experience should…

People in this episode

Host: Dr. Anneke van der Walt

Guests: Jon Strum, Kathryn Smith

Topics covered

• multiple sclerosis
• disease labels
• patient experience
• MS progression
• communication
• advocacy

Keywords

• multiple sclerosis
• disease course
• relapsing-remitting
• secondary progressive
• PIRA
• patient voice
• clinical conversations

Mentioned in this episode

Organizations: Multiple Sclerosis Journal, National MS Society

More episodes of The ECTRIMS Podcast

• Fenebrutinib in Relapsing MS: FENhance Trial Results Explained · April 22, 2026 · 26 min
• How MRI and OCT are Changing Multiple Sclerosis Diagnosis, Prognosis, and Treatment · April 8, 2026 · 25 min
• Rehabilitation in MS and the Case for Early Intervention · February 25, 2026 · 22 min
• Fenebrutinib in PPMS: Insights from ACTRIMS Forum 2026 · February 7, 2026 · 34 min
• Harnessing the Gut Microbiome in MS: From Insight to Intervention · January 13, 2026 · 33 min
• How well are we measuring cognition in MS? · December 8, 2025 · 30 min