Two out of every 100,000 inhabitants annually develop Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease with no cure that attacks the motor neurons that control muscle function and, on the occasion of the World Day being commemorated this Tuesday, specialists highlighted the importance of that patients can access the appropriate treatments that allow them to improve their quality of life.
Every June 21, we seek to make visible this disease that It mostly affects people over the age of 40. and insists on the need to increase research and treatments to stop the chronic progression of ALS and find a cure, within the framework of the actions deployed throughout the world from the establishment of the commemorative date established in the VI Meeting of the International Alliance of ALS Associations held in 1996 in the US city of Chicago.
“It is a progressive disease and its evolution occurs in years. If it is diagnosed in a timely manner and proper treatment is given, it can improve a lot. the quality of life of patients, despite the fact that it is unknown why in some people it evolves more quickly than in others”, he explained to Télam pediatrician doctor Eduardo Silvestreformer head of spontaneous care at Garrahan Hospital.
The specialist also clarified that “there are very few cases of this disease in childhood” because it is a condition that usually appears after the age of 40.
According to the Argentine ALS Association, the incidence of people who will develop the disease each year is about 2 in 100,000 of the general populationwhile the number of people living with ALS at the same time is about 7 in 100,000.
For its part, Valeria El Haj, medical director of the Ospedyc social workremarked that it is a disease that “is developed by a combination of genetic and environmental factors.”
“In terms of risk factors, the possibility of suffering from it increases with age, and it is more common between the ages of 40 and mid-60s,” El Haj said in a news release.
Before the age of 65, amyotrophic lateral sclerosis is slightly more common in men than in women.but this sex difference disappears after age 70, he explained.
The writer Roberto Fontanarrosa, the drummer Martìn Carrizo, the scientist Stephen Hawking and the former senator Esteban Bullrich suffered or suffer from ALS
Smoking, according to the specialist, is a recognized environmental risk factor for ALS, and can also affect exposure to environmental toxins. Because it is a progressive condition, the first symptoms may begin in the lower and upper limbs: “Patients progressively lose strength in their arms and legs and compromise swallowing and respiratory muscles”Sylvester specified.
“The great benefit is that their quality of life improves if their treatment is given at home, where the chances of hospitalization due to in-hospital illnesses decrease, as do the economic costs because It is contemplated within the Mandatory Medical Plan (PMO) of the social works”pointed out the pediatrician and scientific communicator of the Medihome company, which is dedicated to home hospitalization and the treatment of patients with ALS.
Although he clarified that the final diagnosis is based on clinical evaluation and a combination of studies, the specialist warned that the warning signs that require immediate consultation are “progressive loss of muscle strength, difficulties walking, writing, times to speak, and the more advanced stages can show respiratory muscle problems.
The writer and graphic humorist Roberto Fontanarrosa, the drummer Martìn Carrizo and the English scientist Stephen Hawking are some of the famous people who suffered from this degenerative disease and currently the former senator and former Minister of Education Stephen Bullrich go through this condition.
The former national senator also claimed days ago, through his social networks, the approval by the ANMAT of a drug called AMX 0035, which was legally admitted in Canada for the treatment of ALS patients.
“ALS patients don’t have time to wait for so much bureaucracy. Argentine laboratories have everything ready to be able to produce this medication here and help us have more time for our loved ones,” argued Bullrich.
Faced with Bullrich’s observations, the ANMAT clarified that “no laboratory has formally presented for evaluation the documentation corresponding to the product AMX-0035”, and specified that the new drug was authorized by the Canadian Health Agency “under special conditions for the tratment of Amyotrophic Lateral Sclerosis (THE A)”.
“As happens in other agencies in the world, the presentation of information for this type of case can be done before the ANMAT within the framework of the regulations established for special registries. This allows a dynamic and abbreviated evaluation and registration process. 34 medications for various pathologies are registered in the country under this figure,” the agency said in a statement.
