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Influenciadora com doença rara compartilha sua rotina nas redes sociais - Jornal Estado de Minas | Notícias OnlineEstado de Minas
Muitas pessoas enfrentam longas esperas no Sistema Único de Saúde (SUS) em busca de medicamentos e tratamentos médicos essenciais. Para Marina Melo, influenciadora que vive com atrofia muscular espinhal (AME), essa jornada foi marcada por 15 meses de espera judicial pelo o ao medicamento vital para seu tratamento.
O medicamento em questão, Risdiplam , aprovado pela Agência Nacional de Vigilância Sanitária (Anvisa), em outubro de 2020, é fundamental para retardar a progressão da perda de neurônios - os quais são responsáveis pelos movimentos do corpo. E apesar de não ser uma cura para a AME, é capaz de mitigar suas complicações. No entanto, seu alto custo e disponibilidade limitada pelo SUS tornam sua autorização um desafio. “Recebi a indicação para tomá-lo, mas sabia que precisaria ar por um processo longo, já que ele só é oferecido pelo SUS em casos específicos, diferentes do meu. E que seria impossível custear o tratamento, uma vez que cada caixa chega a R$ 70 mil se comprada de maneira avulsa”, explica a influenciadora.
Marina compartilha sua luta contra a doença rara que causa fraqueza muscular nas redes sociais com o intuito de mostrar aos seguidores sua independência e realidade. Diagnosticada com AME aos oito meses de idade, nunca andou, mas por ter iniciado as sessões de fisioterapia cedo, conseguiu desenvolver melhor seus movimentos.
“O diagnóstico chegou aos oito meses de vida. Quando ainda era bebê, toda vez que me colocavam sentada, eu caía de lado, sem fazer esforço para me levantar. Após ar por alguns médicos, fiz um teste genético que apontou a existência da doença e sua classificação”, explica a influenciadora que, com carinho, relembra que até seus seis anos conseguia ficar de joelhos e - com isso, tem memórias especiais de quando amarrava seus sapatos.
Em 20 de dezembro de 2022 a jovem recebeu a resposta do processo e iniciou o tratamento. Mesmo assim, ainda que enfrente dificuldades, Marina busca viver uma vida comum. "Sabe quando você sente algo tão forte que nem consegue traduzir em palavras? Uma mistura de alívio, felicidade e medo: foi assim que me senti quando recebi, no dia 20 de dezembro de 2022, a notícia pela qual esperei por mais de um ano”, enfatiza com emoção.
Atualmente, a jovem revela ter muito mais independência, pois realiza muitas coisas sozinhas por conta de sua cadeira motorizada, no entanto, ainda precisa de um e durante boa parte do dia, pois não consegue ter 100% de autonomia. “Ainda preciso de um auxílio para sentar, tomar banho e realizar outras atividades. Quando estou na cadeira, consigo estudar, gravar vídeos e, estando com os os objetos à minha disposição, fazer de tudo um pouco. A ibilidade me dá autonomia”, revela.
Marina está próxima de concluir sua graduação em design gráfico e é ativa na criação de conteúdo online, onde destaca a importância do o a tratamentos médicos e promove a conscientização sobre a inclusão e o combate ao preconceito. Com sua determinação, tornou-se uma voz influente, não apenas na conscientização sobre a AME , mas também em suas experiências no universo da maquiagem e beleza. " Busco atingir cada vez mais pessoas que estejam dispostas a entender, compreender e respeitar todas as pessoas que possuam algum tipo de deficiência", afirma.
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