The president of the Myasthenia Association of Spain (AMES), Raquel Pardo, has highlighted "the need to continue researching to find a curative drug, which does not yet exist," for myasthenia, while at the same time emphasizing the importance of "raising awareness" in society about this pathology.
Coinciding with the commemoration, this Tuesday, June 2, of World Myasthenia Day, Pardo considers it opportune to "advocate for earlier diagnoses and true territorial equity in access to new treatments, services, and in the recognition of disability," recalling that it is a disease "still very unknown, invisible, and fluctuating."
From AMES, they insist that this "invisibility" carries "direct consequences on the health and quality of life of affected people," since "often their symptoms go unnoticed or are attributed to other causes." The entity emphasizes that it is "a rare and chronic neuromuscular disease that affects communication between nerves and muscles, causing fluctuating muscle weakness and fatigue, which worsen with effort and improve partially with rest."
The association specifies that the origin of myasthenia "can be autoimmune (myasthenia gravis) or congenital, in a smaller percentage," and that "it affects voluntary musculature, so everyday actions such as eating, speaking, seeing, or even breathing can be compromised."
Delay in diagnosis and its effects
Regarding the "diagnostic delay" of this disease, AMES warns that it "hinders early access to treatments, generates a feeling of incomprehension, can favor the progression of the disease, and cause irreversible deterioration of the neuromuscular junction—the structure that allows communication between the nerve and the muscle."
For this reason, the organization defends the need to "improve knowledge of myasthenia and recognize its symptoms early," something it considers "fundamental to guarantee adequate care and preserve the quality of life of affected people." With this objective, it has launched the campaign 'Unknown Protagonists,' defined as a "social awareness initiative that uses the cinematic language of action and epic to make visible the daily reality of people living with this disease."
This informative proposal "combines audiovisual creativity, health dissemination, photographic exhibitions, institutional actions, participatory activities, and meeting spaces" and aims to "highlight the extraordinary effort that many people with myasthenia gravis make every day to carry out activities that for most are routine," stated AMES, who also announced that "a hundred emblematic buildings, spread throughout Spain, will be illuminated in green."