A Amyotrophic lateral sclerosis (ALS) is a rare, progressive, degenerative neurological disease, being the most common form of motor neuron disease (MND). It is estimated that around 600 to 800 Portuguese suffer from this disease whose day is marked today, June 21.
Symptoms to watch out for are “gradual reduction in muscle strength without pain, progressive difficulty in verbal articulation, and progressive respiratory fatigue without an identified pulmonary or cardiac cause”explains Pr. Mamede de Carvalho, member of the scientific council of APELA and head of the neurophysiology department and head of the neuromuscular unit of the Centro Hospitalar Lisboa Norte.
ALS does not affect the senses – sight, smell, taste, hearing and touch – and rarely affects the functioning of the bladder, bowels or the ability to think and reason.
In an interview with Up-to-the-minute newsthe doctor points out that this is a disease that takes time to diagnose for three basic reasons. “They are considered more frequent diseases that can cause the same neurological condition; late consultation with the neurologist, usually initial observation by orthopedics or even neurosurgery; delay in carrying out electromyography, at least with a person with experience in this disease”refers to.
In the case of Portugal, “unlike other European countries, there are no reference centers for monitoring amyotrophic lateral sclerosis”. “This should not be aimed at a complex application process full of economic and other analyses, a call for services, but only the recognition of places with greater experience of this disease and where patients can increase the benefits of an accompaniment multidisciplinary”. According to Pr. Pour Mamede de Carvalho, it is a very inexpensive disease to treat, “it therefore requires simple solutions”.
As for Fernando Pita, coordinator of the functional neurology unit of the Hospital of Cascais, “a lot is missing, as with all chronic and debilitating illnesses”.
In terms of home support, “to try to maintain the social and family integration of patients for as long as possible, with multidisciplinary teams, promoting the maintenance of possible motor activity, mobilization, respiratory and food care”, he specifies. In later phases, it will be important “the possibility of institutionalization and palliative care”.
Artificial intelligence sensors and algorithms will allow you to monitor the disease
Still according to Mamede de Carvalho, “new drugs will be on the market in the next 5 years”and forms associated with specific mutations “will undergo precision processing to correct this defect” and in the future, “sensors and artificial intelligence algorithms will allow you to follow the disease and its complications from more comfortable (at home) and efficient way for patients”.
The evolution of the disease in Portugal “remains stable in terms of incidence and prevalence”, considers Fernando Pita, who underlines that the effectiveness of the pharmacological therapy currently available, “will be at most marginal”.
“The two major interventions that improve quality of life and life expectancy are PEG feeding (a tube that allows direct access to the digestive tract through the abdominal wall) and NIV (non-invasive ventilatory support used at night The last is to preserve quality of life and avoid suffering, ”reveals the declarations specialist to the Up-to-the-minute news.