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| With the commemorative green lighting of the façade of the Town Hall building | The Plenary will debate a motion to request the Public Administrations to provide the necessary aid to provide the affected people with the care that guarantees them a decent quality of lifeThe municipality of Totana is going to join this weekend the International Day of Amyotrophic Sclerosis (ELA), which is celebrated every June 21, with the commemorative green lighting of the main facade of the town hall building.This was announced by the councilor for Social Welfare, Javier Baños, who, together with the president of the Association of Affected and Relatives of People Affected by Amyotrophic Sclerosis (ELA) in the Region of Murcia, the totanero Damián Guerao, have explained the initiatives that are going to be promoted in this municipality.Totana already held last year the first charitable activities for this cause with the organization of the I Solidarity March "United for ELA", which included a charitable day of festivity and coexistence in the municipal park "Marcos Ortiz" and solidarity concerts, according to they remembered.In addition, the municipal plenary session is going to debate this month, at the initiative of the Departments of Health and Social Welfare, a motion to commemorate this day and request the regional and state Public Administrations to provide the necessary aid to provide affected people with the care that guarantees them a decent quality of life.In the proposed motion, as explained by Councilman Javier Baños, it is going to be asked to guarantee that all people with ALS have access to the same care and help necessary regardless of the Autonomous Community where they reside.As the mayor commented, patients have different support according to the territory, since, in the different territories, there are different realities of health care.This progressive pathology affects the motor neurons of the brain while the intellectual capacities are intact.

It is a cruel disease, of which the causes are unknown and, for the time being, incurable, which decreases muscle strength until the person suffering from it loses the ability to speak, swallow, move, walk and, finally, breathe, as Damián Guerao related.However, it does not affect sight or sensory fibers and sick people are fully aware of their deterioration, and of living trapped in a body that stops working until death.

In Spain, every day, 3 new cases of ALS are diagnosed and 3 people die from this disease.The average cost of caring for a person with ALS reaches 35,000 euros per year; and it is an incurable, progressively disabling and fatal neurodegenerative disease within a period of 2 to 5 years from its diagnosis.These people can extend their survival if they undergo a tracheostomy to connect to a mechanical ventilator and if they have the adequate financial resources to afford sufficient means and adequate care 24 hours a day.In addition, the disease is an economic problem for the patient's environment, since most people with ALS do not have the money to bear the expenses and end up committing their environment financially, selling properties, borrowing their families, etc., to just being able to afford to continue living.

There are even many ALS sufferers who prefer not to have a tracheostomy and stop living so as not to put their family in such an expensive and difficult situation to bear.This disease does not only affect sick people, since families suffer from it in a very direct way, since it is common for some member to leave their job, train as a caregiver and dedicate 24 hours a day, every day, to accompany and care for those who suffer from this disease.One of the problems of ALS patients is that they are outside the Public Health System, since the Health systems, being hospitalized at home, have derived direct attention to the Social Services system, even when they have not they are qualified, nor do they have the competencies to carry out specialized health care (physiotherapy, respiratory, nutritional care, etc.).The ELA Region of Murcia Association has been working in the Region of Murcia; a non-profit entity made up of affected people and relatives of those affected, whose main objective is to improve the quality of life of those affected, their family members and their caregivers through training, psychological support, guidance and information.     

Source: Ayuntamiento de Totana / Totana.com