THAT Amyotrophic lateral sclerosis (ALS) is a degenerative, progressive and rare neurological disease that is the most common form of motor neurone disease (MND). It is estimated that around 600 to 800 Portuguese suffer from this disease, whose day is marked today, 21 June.
Symptoms to be aware of are “progressive reduction in muscle strength without pain, progressive difficulty with verbal articulation and progressive respiratory fatigue without identified lung or heart cause”says Prof. Mamede de Carvalho, member of the scientific board of APELA and head of the neurophysiology service and responsible for the neuromuscular unit at Centro Hospitalar Lisboa Norte.
ALS does not affect the senses – sight, smell, taste, hearing and touch – and rarely affects the function of the bladder, intestines or the ability to think and reason.
In an interview with News by the minutethe doctor emphasizes that it 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 of orthopedics or even neurosurgery; delay in performing electromyography, at least with a person with experience in this disease.”refers.
In the case of Portugal, “unlike other European countries, there are no referral centers for the follow-up of amyotrophic lateral sclerosis”. “This should not be aimed at a complex application process full of financial analyzes and the like, an appeal of the services, but only a recognition of places with greater experience of this disease and where patients can increase the benefits of interdisciplinary support”. According to Prof. Mamede de Carvalho, this is a very cheap disease to treat, “so it requires simple solutions”.
As for Fernando Pita, coordinator of the functional neurological unit at Cascais Hospital, “there is a lot missing, as for all chronic and debilitating diseases”.
In terms of home support, “in an effort to maintain the social and family integration of patients for as long as possible, with interdisciplinary teams promoting the maintenance of possible motor activity, mobilization, respiration and nutritional care,” he says. In later stages it will be important “the possibility of institutionalization and palliative care”.
Artificial intelligence sensors and algorithms will allow disease monitoring
Also according to Mamede de Carvalho, “new drugs will be on the market in the next 5 years”and the forms associated with specific mutations “will have a precision treatment to correct this defect” and in the future “sensors and artificial intelligence algorithms will allow you to monitor the disease and its complications in a more comfortable way ( in your home) and effective for patients “.
The development of the disease in Portugal “remains stable in terms of incidence and prevalence”, says Fernando Pita, who emphasizes that the effectiveness of the pharmacological treatment currently available “will be at most marginal”.
The two major interventions that improve quality of life and life expectancy are PEG feeding (a probe that provides direct access to the digestive tract through the abdominal wall) and NIV (non-invasive ventilation aid used at night). The last is to maintain quality of life and avoid suffering “, the specialist reveals in statements to News by the minute.
Also read: Experts warn of the need to set up multiple sclerosis centers
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