2023-06-02 08:02:22
Patients suffering from myasthenia, a rare neuromuscular disease of unknown origin, chronic and autoimmune, call for early diagnosis, investigation and visibility on the International Day of this pathology
Research and early diagnosis are key elements in the approach to myasthenia, a neuromuscular disease for which the Myasthenia Association of Spain (AMES) also requests visibility.
Myasthenia is characterized by weakness and fatigue of the skeletal or voluntary muscles of the body, resulting from a breakdown in the normal communication between nerves and muscles.
Usually, the first symptoms are ocular, such as drooping eyelids (palpebral ptosis) and/or double vision (diplopia).
It is a very little known disease that in some cases becomes disabling, greatly affecting the quality of life of patients.
Although it is less frequent, it can be congenital (MC). There is currently no cure, although there are palliative treatments that can help alleviate symptoms.
International Myasthenia Day, June 2, coincides with the commemoration, for the first time, of the European Day of this disease, also known as myasthenia gravis.
A campaign to give visibility to myasthenia
To give visibility to this disease, AMES and the biopharmaceutical UCBCares have launched the campaign “Energy to break limits in myasthenia” which will take place throughout the month of June.
This is an initiative that aims to give visibility to this neuromuscular disease and empathize with patients so that they do not feel misunderstood.
This campaign focuses on raising awareness about the real limitations of people with myasthenia and showing society that the disease goes beyond the visible, physical and mental symptoms.
For this, it will have the collaboration of health professionals who will encourage their patients to support people who live with myasthenia. Also with patient associations, opinion leaders and with the support of anyone who wants to join through social networks.
“The importance of this campaign lies in the viralization of the challenge (challenge or challenge) that will make the word myasthenia more and more known and they will know what the disease consists of so that they can understand it, especially if they are from the closest environment or future professionals in the health field such as: primary care, neurology, psychology, speech therapy, physiotherapy, social work, etc.”, highlights Raquel Pardo, president of AMES.
Myasthenia data in search of visibility
- Every year 700 new cases are diagnosed in Spain.
- More than 15,000 people suffer from myasthenia in Spain.
- 60% of them are diagnosed within the first year of experiencing the first symptoms, although there may be a delay in diagnosis of up to three years.
- Between 10 and 20% of cases, myasthenia debuts in children and adolescents.
- In all European countries there is an increase in the incidence of this disease in people over 50 years of age.
What patients ask for
Through the AMES, patients ask to be recognized and demand specialized and holistic care from the health system that allows an early and accurate diagnosis to be obtained.
Shortening the diagnosis time is essential and this would help primary care physicians to receive training on myasthenia, request those affected.
They also call for more research, “humanization of health” and, urgently, territorial equity, since access to new medicines depends on the place of residence, they denounce.
At the beginning of this year, a study was published with data from 15 Spanish hospitals included in the Spanish Registry of Neuromuscular Diseases of the CIBERER (NMD-ES), whose results show that 8.5% of them suffer from refractory myasthenia, being drug resistant. The most affected population are women and patients with early onset of the disease.
European Myasthenia Awareness Day
Coinciding with International Myasthenia Day, this year marks the first European Myasthenia Awareness Day, an initiative that came about thanks to the All United for MG coalition, made up of a group of European patient associations from Germany, Belgium, France, Greece, Italy, Poland, Romania and Spain, represented by AMES.
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