BRUSSELS — On Rare Disease Day, patient associations and representatives3 from Belgium, France, Germany, Greece, Italy, Romania and Spain have come together in the #AllUnitedforMG coalition to announce the creation of European Myasthenia Gravis Day.
A special Myasthenia Gravis Day
June 2nd is an opportunity to create a moment in time for myasthenia gravis (MG) patients across Europe, in order to better understand the burden of this disease. By driving this momentum, the coalition shows its determination to strengthen patients’ rights to a better quality of life. For many MG patients, the care pathway is a source of stress and uncertainty. The lack of recognition of the burden of the disease across Europe creates inequalities in patient care.
That is why the ‘‘All United for MG’ coalition is launching an awareness campaign to highlight the strength, courage and resilience of patients suffering from myasthenia gravis. “This campaign, which will reach its zenith on 2nd June 2023, aims to give patients and their caregivers a voice by highlighting the impact of this disease on their physical and mental well-being. We are not simply looking for support but also for empathy amongst the general public, for an improvement in the therapeutic approach and the manner in which doctors and patients interact with each other. Our aim is to enhance patients’ quality of life and reduce their mental burden,” conclude the founders of the European Myasthenia Gravis Day.
Impact on the quality of life
Myasthenia gravis is a serious, rare, and chronic neuromuscular autoimmune disease that can cause debilitating and potentially life-threatening muscle weakness. Put simply, the body’s natural defences are not working the way they are supposed to. It often shows up in the face first, with drooping eyelids being an early sign. Weakened eye muscles can also lead to double or blurred vision. Smiling, chewing and breathing can also be affected, as well as the arms and legs. Because MG is rare, some medical professionals are not fully aware of it or its symptoms. Frustratingly, this can often result in misdiagnosis, mismanagement and misunderstanding.
“Our illness is invisible and hard to understand if you don’t suffer from it. […] I want to lift my arm to pick up my cup, but my body doesn’t follow. It feels as if I am lifting 100 kg. […] Every ordinary action is a battle, it’s like becoming a child again. Every day is a learning day, every situation is new. The problems I had to deal with yesterday will be different again today,” says a patient.
Aside from the symptomatic aspect, MG has a wider societal impact. The unpredictable nature of the disease’s physical manifestations complicates patients’ interactions with others. This can often result in a feeling of embarrassment, increasing the risk of anxiety and depression. Finally, the burden of the disease makes it difficult to plan their lives, impacting them not only socially but also professionally. Both patients and caregivers often have to abandon their careers or change their working hours, leading to potential financial problems, as well as isolation, frustration, and guilt.
This press release was produced with the institutional support of argenx.
1. Sanders DB, Wolfe GI, Benatar M, Evoli A, Gilhus NE, Illa I, et al. International consensus guidance for management of myasthenia gravis: Executive summary. Neurology. 2016;87(4):419-25.
2. MG is short for “Myasthenia Gravis”, the English name for the disease.
3. Belgium: ABMM, MG Liga, Scientific board member of MG LIGA. France: AMIS, AFM-Telethon Myasthenia interest group. Italy: AIM, Besta Institute. Spain: AMES, San Pau Hospital Barcelona.