Deputy presents PL to establish awareness week on Spinal Muscular Atrophy

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The Amazon has registered some cases in recent years

Unknown to a large part of the population, Spinal Muscular Atrophy (AME) is a rare neuromuscular disease, of genetic origin and characterized by severe and progressive muscle weakness. With the aim of expanding information about this disease and, consequently, providing better living conditions for those affected by it, state deputy Roberto Cidade (UB), presented the project that establishes the “Spinal Muscular Atrophy (SMA) Awareness Week”transformed into Law No. 6,274/2023.

The proposal establishes that, annually, in the first week of August, the “Spinal Muscular Atrophy Awareness Week” with the promotion of lectures, debates, public hearings, in addition to advertising campaigns on the subject.

The deputy points out that, despite being a rare disease, which affects one in every 10,000 people born, Amazonas has registered some cases in recent years.

“It is a rare disease and, therefore, is little known to most people. But it’s not because it’s rare that we shouldn’t give importance. I have recently seen several actions on the social networks of Amazonian children diagnosed with AME. AME has no cure, but when the diagnosis is made early, accompanied by physiotherapy, clinical treatment and some orthopedic devices, it helps to maintain the independence of the affected children and provides a more dignified life”

he said.

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Spinal Muscular Atrophy is a rare neuromuscular disease of genetic origin and is characterized by progressive severe muscle weakness and decreased muscle tone and strength, resulting from the degeneration and loss of motor neurons in the spinal cord and brainstem nucleus.

The disease can be identified between zero and six months of life in the child’s routine consultations, as it affects the baby’s normal development.

The baby cannot swallow and feed, there are breathing difficulties and there are also difficulties holding the head or sitting without support.

*With information from Aleam

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