New European Myasthenia Gravis Day to kick off awareness month
All United for MG coalition sets first campaign for June 2
The ad hoc All United for MG coalition has established European Myasthenia Gravis Day — set for June 2 — to raise awareness of the neuromuscular autoimmune disease, and to call attention to the needs of this community of patients in Europe.
The day will fall at the start of Myasthenia Gravis Awareness Month, observed globally each June. In Europe, myasthenia gravis (MG) is thought to affect between 56,000 and 100,000 individuals.
The European coalition, which made its announcement on Rare Disease Day, Feb. 28, is comprised of patient associations and other representative groups from Belgium, France, Germany, Greece, Italy, Romania, and Spain. The target of the new awareness drive is the general public, healthcare professionals, and European institutions.
“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,” the European Myasthenia Gravis Day founders said in a press release.
“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,” the group said in a statement, adding, “Our aim is to enhance patients’ quality of life and reduce their mental burden.”
While MG usually affects women younger than 40 and men older than 60, it can manifest at any age. The disease impairs communication between nerve and muscle cells, resulting in muscle weakness and fatigue. Affected muscles may include those involved in breathing, as well as those of the eyes, face, jaw, throat, arms, and legs.
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.
Because of its rarity, some healthcare providers are not fully aware of MG or its symptoms. This frequently results in misdiagnoses and disease mismanagement, according to the coalition.
“Our illness is invisible and hard to understand if you don’t suffer from it,” an unnamed patient said in the coalition’s statement. “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 [220 pounds].”
For this patient and others with the disease, “every ordinary action is a battle,” the statement says.
“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,” the patient said.
The disease course is unpredictable, which can complicate patients’ interactions with others. As a consequence, individuals with MG can end up feeling embarrassed, which can cause anxiety and depression, the coalition said. Further, MG can make it difficult for patients to plan their lives, which can affect them socially, as well as professionally.
Oftentimes, patients and their caregivers are forced to give up their careers or reduce their working hours, which can lead to financial challenges, as well as feelings of isolation, frustration, and guilt, the coalition noted.