Amyotrophic Lateral Sclerosis, known as ALS, is a rare disease that affects the neurons that take care of the voluntary muscles, progressively degenerating them and causing the paralysis and atrophy of these muscles.
The ELA, which celebrates on Tuesday, June 21, its International Day, is the third most common neurodegenerative disease, and although there is no clear established profile, it is usually diagnosed to middle-aged patients, who come to the specialist after observing clear signs, such as Falls, disturbances in speech, breathing or swallowing.
Experts warn that in Spain the prevalence of this condition, highly disabling, is higher than in other parts of the world; Each year almost 900 new cases are diagnosed, and the total number of affected people is around 4,000 patients. "In Spain, the prevalence of ALS is higher than in other parts of the world, if the normal is one case per 100,000 inhabitants, here this percentage rises to almost 3 per 100,000," explains the doctor of the Laguna Care Center Hospital to Europa Press. Yolanda Zuriarraín, specialist in the assistance to these patients at the end of her life.
The specialist points out that, in addition, life expectancy is not very long, "the average is two to five years since it is diagnosed", since at this time the affected person loses his ability to move and control the voluntary muscles , affecting mobility of the upper and lower extremities, speech, breathing and swallowing.
"It affects the central nervous system - he explains - what produces a degeneration of the neurons of the cerebral cortex, that gives symptoms of progressive muscle weakness in the form of paralysis, which can spread throughout the body, motor alterations that cause you can not walk, or move your hands, so you can not write, eat, etc., this ends up producing the most acute and fatal, which is a respiratory failure".
In the last 20 years much progress has been made in the knowledge of the disease, and new drugs have been discovered that slow down its progression
Although this loss of faculties is progressive, each case evolves and is different, for this reason and due to the lack of knowledge of its origin, "it is a disease that takes time to be diagnosed". However, it does not affect the cognitive plane, that is, intelligence or reasoning is not altered.
"In the last 20 years much progress has been made in the knowledge of the disease, a little more research has been made at the epidemiological level, and the diagnostic criteria have been synthesized or further specified, and new drugs have been discovered that slow down or make that the disease does not progress so quickly, "Zuriarraín observes.
More resources are needed
Although it is a disease that has no cure, the symptoms can be treated so that patients enjoy the best quality of life possible, and for this it is important the assistance offered by multidisciplinary teams.
"These patients need a lot of psychological and functional help," he explains, and with the creation of these teams "much progress has been made", since "they respect the patient's autonomy in their interventions when providing technical, mechanical aids, which can serve to prolong their quality of life. "
In the opinion of this expert, however, there is still a large deficit in the investigation of this pathology, although there are different lines of work throughout the world, but what the sick people need most is greater and better care. In this sense, Zuriarraín demands more resources, since these patients increasingly need antibiotics, occupational therapy or physiotherapy and, in general, "a specific assistance that can make them want to live". "You have to make an action plan with the patient and give life to his life," he adds.
Source: EUROPE PRESS