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November 15, National Day of Neuromuscular Diseases

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More than 60,000 people in Spain coexist with a neuromuscular disease

This Saturday, November 15, commemorates the National Day of Neuromuscular Diseases. In Spain, more than 60,000 people, and among them a high percentage of children, coexist with a neuromuscular disease.

Muscular dystrophies, myasthenia, and amyotrophic lateral sclerosis (ALS) are the most well-known neuromuscular diseases, but there are more than 150 pathologies that fall under this term and are characterized by muscle weakness. Most of them are chronic, progressive and debilitating, which implies an important disability and dependence.

In Spain, ALS is the most frequent motor neuron disease in adults and the third neurodegenerative disease, after dementia and parkinson. However, compared to the relative homogeneity of ALS, the rest of the neuromuscular diseases constitute a very large and heterogeneous group, which makes it difficult to approach them globally.

Although there are frequent diseases, such as acquired polyneuropathies, which affect eight percent of the general population, many of them are infrequent and encompass all rare diseases.
This fact makes them unknown by society or even the medical community, which implies diagnostic delays, little public health support and few resources for research and development of new therapies.

Neurologists draw attention to the costs associated with these diseases, especially in the case of the leading causes of disability, such as ALS and muscular dystrophy, which are close to 50,000 euros per year.

From the Spanish Federation of Neuromuscular Diseases (ASEM), it is claimed the recognition of the needs of the group from the perspective of participation with an inclusive approach, in which the decrease of muscular strength does not constitute an obstacle in the development of the person As a social being, affected by the loss of mobility and autonomy.

This November 15, in cities like Madrid, Seville, Barcelona, Bilbao, Gran Canaria Gijón or Valencia have organized activities at the foot of the street, as human chains of solidarity in emblematic places that will materialize the motto of this year: "The 15N hand".

And the campaign for the Day of Neuromuscular Diseases continues # DELAMANO15N, where you can participate by sending photographs of people holding hands to develop a solidarity mural.

Www.enfermedadesneuromusculare ...

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