Myasthenia Gravis Awareness Month: From Awareness to Action

Author: Ahmad Alrawi, Global Head of MG, UCB

Around 4% of the global population is living with a rare disease at any given time.?Individually rare but collectively common, these diseases pose distinctive challenges and are associated with both multiple medical and social needs. Moreover, some the greatest needs cannot be measured in numbers. To create genuine value for these communities, we must have the right mindset to meaningfully listen and engage.

Myasthenia gravis (MG) is one such disease. Occurring when the body’s immune system mistakenly attacks the connections between nerves and muscles, people with MG experience varying, fluctuating symptoms such as fatigue, muscle weakness, and difficulty breathing and swallowing.?

Like many other rare diseases, the journey of living with MG is a multi-step process characterized by unpredictability. From the very beginning, the search for an accurate diagnosis can turn into an odyssey, with patients and their loved ones navigating several unknowns. Unfortunately, the unpredictability doesn’t stop there. Every day, people living with uncontrolled generalized MG face fluctuating, debilitating symptoms which contribute to almost half of patients feeling dissatisfied with their quality of life.?Patients lose invaluable ‘good days’ as they try to cope with these daily fluctuations and continually make trade-offs in all aspects of their lives.

June is MG Awareness Month, and aims to bring the MG community together to raise awareness of this condition, while promoting the efforts being undertaken to support individuals living with MG. This year’s official theme – ‘Turning Awareness into Action’ - is also at the heart of UCB’s commitment to driving real change for patients with this debilitating disease.

In the last year, UCB has worked alongside the patient community to truly understand the complexities that face those living with MG. Firstly, the publication of the seminal paper -‘The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis’, explored the significant physical, psychological, social and day-to-day experience of living with the rare autoimmune condition while identifying the need for improved dialogue between patients and clinicians. This was quickly followed by the development and launch of the report “Collaborating for the myasthenia gravis community”. Jointly developed with 14 patient groups from across Europe, this report sets out a roadmap for improving the lives and health outcomes of people living with myasthenia gravis by 2030.?

While these initiatives are a vital step forward for the MG community, and awareness is essential, knowing is only half the work. Momentum demands continuous movement. Next, we must move to fanning the flames of awareness until they ignite into a reshaped MG landscape and an improved patient experience.?

We are incredibly motivated by the work that is underway in the community to bring about real change and deliver the care deserved by people living with MG. At UCB, we are energized and look forward to the next phase of our long-term collaboration with the global MG community to follow up on the most critical actions that deliver on the key focus areas identified in these two pieces of collaborative work, as agreed with patient representatives.?

Maintaining momentum is a matter of perspective and setting greater goals, and as such, we are also working to better illuminate what it is really like to live with MG, which will complement the roadmap we set for ourselves.?

Our ambition remains rooted in collaboration with the MG community to facilitate awareness and actions-based discussions to ultimately help patients take back those ‘good days’.?