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JUNE IS
MG AWARENESS
MONTH

Understanding the challenges of a rare disease and the journey that follows is critical to the work we do. That’s why we partner so closely with patients and caregivers to ensure it’s their stories and experiences that inform our research and development.


And while each condition may affect smaller numbers of individuals, the strength and reach of our global community makes it clear than no one is alone.

Myasthenia gravis (MG) is a rare, autoimmune antibody-mediated disease that affects the postsynaptic membrane at the neuromuscular junction (NMJ) of skeletal muscles1-3
In individuals older than 50 years of age, MG is slightly more common in males than in females.1
In individuals younger than 50 years of age, MG is slightly more common in females than in males.1
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As a consequence of living with fluctuating symptoms, people with MG navigate a constant state of adaptation to their muscle weakness. They have to make continuous assessments and trade-offs in all aspects of their life, including crucial areas such as work, family planning and treatment.

Every patient will have muscle weakness, but the difficulty to live with is that it is so unstable....the fluctuation is even worse to live with than the muscle weakness itself

Patient advocate, patient council

You feel it from the moment you wake up and you have to adjust your routines and expectations; I live day by day. Those bad days you need to prioritise the most important activities, or the most basic, and try to work with your medication

Person with mg in the qualitatitive study5
Despite suboptimal disease control, there can be a reluctance among both patients and HCPs to alter their comfort zone of MG treatment.

Multiple factors contribute to this ‘treatment inertia’, which can result in people with MG being under-treated. These include a lack of consensus on what constitutes optimal disease control, concerns over potential additional side effects and the time needed to see the benefits of a change in treatment.

These factors can lead to a reluctance to ‘rock the boat’. Furthermore, some patients who are not treated by a specialist can feel that their HCP does not fully understand their disease.
Insights into the lived experience of MG patients were collected from a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review.
A tale about myasthenia gravis told by the creative illustrations of Maya Uccheddu, aka Lady M, an Italian pharmacist and freelance digital artist, who lives with gMG
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Gilhus NE, et al. Myasthenia gravis. Nat Rev Dis Primers. 2019;5(1):30.  Koneczny I, Herbst R. Myasthenia gravis: Pathogenic effects of autoantibodies on neuromuscular architecture. Cells. 2019;8(7):671. Melzer N, et al. Clinical features, pathogenesis, and treatment of myasthenia gravis: A supplement to the Guidelines of the German Neurological Society. J Neurol. 2016;263(8):1473–1494.  Meriggioli MN, Sanders DB. Autoimmune myasthenia gravis: emerging clinical and biological heterogeneity. Lancet Neurol. 2009;8(5):475–490 Law N, Davio K, Blunck M, Lobban D, Seddik K. The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis. Neurology and Therapy. 2021;10(2):1103–1125