2023-06-21 09:09:37
According to data from the Spanish Society of Neurology (SEN), each year 900 new cases of ALS are diagnosed in Spain. Despite the advances, professionals argue that more specialized units are needed to improve the quality of life of patients.
ALS is a progressive neuromuscular disease that affects muscle control. Image courtesy of the Spanish Society of Neurology.
The Amyotrophic Lateral Sclerosis (ELA) is a neurodegenerative disease that affects the neurons responsible for the control of voluntary muscles and of which 900 cases are diagnosed each year in Spain.
On the occasion of International ALS DayJune 21, the Spanish Society of Neurology (SEN) analyzes the current situation of the disease and the most urgent needs for improve the quality of life of patients.
Due to the low life expectancy of its patients, Amyotrophic Lateral Sclerosis is the third most common neurodegenerative disease in Spain, behind Alzheimer’s and Parkinson’s.
“This pathology has an estimated life expectancy of between 3 and 5 years from the moment of diagnosis,” explains Dr. Francisco Javier Rodríguez de Rivera, Coordinator of the Study Group of Neuromuscular Diseases of the Spanish Society of Neurology.
Today, according to the SEN, it is estimated that between 4,000 and 4,500 Spaniards live with this disease.
“20% of cases manage to survive more than 5 years and only 10% more than 10 years from diagnosis,” adds the professional.
Living with Amyotrophic Lateral Sclerosis
The disease is detected in more than 50% of cases in people between 60 and 69 years, fully productive.
Despite this, the SEN doctor points out that “although it occurs with less incidence, it is also a disease that can be diagnosed in childhood or adolescence.”
“When the disease debuts early, it is generally due to hereditary forms of the disease and several genes involved have already been identified,” explains the doctor.
However, according to the expert, 90% of cases diagnosed with ALS are ‘sporadic’ and are they do not know the causes of its origin.
The illness manifests unevenly in the patients. It can start in the muscles that control speech, breathing, or the limbs. The symptoms are therefore diverse and change over time. Experts affirm that ALS will evolve producing muscular paralysis, generating in patients the inability to move, breathe and speak.
Improve the quality of life of ALS patients
This disease is one of the main causes of disability in the population. This is due not only to the serious muscle involvement it causes, but also to the number of difficulties involved.
In 50% of cases, patients show neuropsychological problems.
In more than 35% of cases, signs of cognitive decline.
Between 5-10% of cases present an associated dementia, generally a frontotemporal dementia.
Dr. Francisco Javier Rodríguez de Rivera, Coordinator of the Study Group of Neuromuscular Diseases of the Spanish Society of Neurology. Image courtesy of SEN.
For Amyotrophic Lateral Sclerosis there is no cure.
Rodríguez de Rivera, explains that today, the management of multidisciplinary therapies allow moderately delay progression of the illness.
“We know that the monitoring of patients in multidisciplinary units manages to improve the quality of life and survival of patients, because good symptomatic control is allowed, the prevention of possible serious complications and early application of ventilatory or nutritional support measures” defends the SEN expert.
From the SENprofessionals insist on the need for a greater number of Specialized Units in the treatment of Amyotrophic Lateral Sclerosis.
“We believe it is necessary for all reference hospitals to have one and that there is at least one specialized Unit for every million inhabitants, because it has not only been found to be the best way to adequately treat these people, but it also helps and facilitates research, so necessary when we talk about this disease” adds the doctor.
According to Rodríguez Rivera, the disease can now be diagnosed earlier, better controlled and treated. However, the ALS continues to require research and advances.
Currently, several clinical trials with various drugs and therapies are underway. “We are confident that in the coming years we will be able to take even more important steps both in medical care and in the treatment of ALS”, concludes Dr. Francisco Javier Rodríguez de Rivera.
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