Seeing beyond the surface: understanding the impact of ocular symptoms in myasthenia gravis

When referring to myasthenia gravis (MG), there is normally a generic reference to muscle weakness. The reality is that the day-to-day life of people living with generalized myasthenia gravis (gMG) can be a roller coaster of many different symptoms that can change throughout the course of a day. Many symptoms can affect a fundamental part of our capability to live our daily life: the eyes, with double vision, drooping eyelids, and general eye trouble.

These may sound like localized symptoms but think about the wider impact. They can affect how someone reads, works, drives, moves through public spaces, or simply feels confident enough to go about a normal day.

Why ocular symptoms matter so much

Ocular symptoms can be visible and disruptive features of gMG. Patients may experience diplopia (double vision) and ptosis (eyelid drooping) because of weakness and fatigue in the ocular muscles. Those symptoms can fluctuate throughout the day, which can make them difficult to capture fully in a brief clinical interaction. Yet, for many people, they are central to their disease experience.

I’ve seen this firsthand through conversations with patients and patient organisations around the world. We recently brought together a Patient Council Association to help deepen our understanding of the unmet needs of adults living with ocular myasthenia gravis. We’re now working closely with 10 groups across Europe, Asia and Australia, and those conversations continue to shape how we think about the condition day-to-day and where UCB may be able to help.

What stands out is how important these exchanges are, not just for building partnerships, but for supporting patient communities and helping ensure people can access relevant advice and information on managing debilitating ocular symptoms.

Looking beyond symptom scores

At the International Congress on Neuromuscular Diseases (ICNMD) 2026 taking place right now, many of the studies we are presenting on gMG include patient-reported outcome measures to capture not just symptom changes, but how treatments affect daily life. In gMG, even modest symptom improvements may influence whether someone feels able to read comfortably, follow a conversation without strain, return to work, or move through the world with greater confidence. As our understanding of the disease grows, it remains essential to prioritize outcomes that reflect patients’ real-world experiences.

A wider neuroimmunology perspective

When you spend time listening to people living with different neurological conditions, you quickly learn that ocular symptoms are not unique to MG. In myelin oligodendrocyte glycoprotein antibody-associated disease, or MOGAD, the symptom experience is different from gMG, but there are meaningful points of connection. People living with MOGAD often experience optic neuritis, reporting blurry vision, double vision, loss of vision, and eye pain. Importantly, in both diseases, vision-related symptoms can reach well beyond the clinic and into everyday life. As a company we are invested in exploring MOGAD further through our ongoing research and development programs.

Looking closer to understand more

What I have learned from being ever closely involved in this area is not only that ocular symptoms deserve attention, but that they deserve empathy. They are highly burdensome, often frustrating, and closely linked to how people function day-to-day. When we pay attention to them, we are not narrowing our view of the disease. We are broadening our understanding of what matters most.