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A discussão sobre pacientes com doenças raras se faz cada vez mais necessária na sociedade, porque ela traz conhecimento, avanços para o tratamento e inclusão. Por isso, o IV Congresso Nacional de Doenças Raras e Anomalias Congênitas (Conamdracon), que aconteceu esta semana no Espaço Cultural José Lins do Rego, no bairro de Tambauzinho, foi tão importante, conforme depoimento dos próprios organizadores e participantes. O evento foi realizado pela Associação Paraibana de Doenças Raras (Aspador), em parceria com a Prefeitura de João Pessoa, por meio do Centro de Referência Multiprofissional em Doenças Raras.  

Durante três dias, centenas de pessoas, entre pesquisadores da área, profissionais e estudantes de Saúde de todo o Brasil, estiveram reunidas em um debate que trouxe entendimento sobre as condições de pacientes raros, além de ampliar os conhecimentos dos profissionais da área.  

Nesta quinta-feira (28), durante o encerramento do evento, uma vasta programação foi apresentada ao público. Além de palestras com temas como ‘A humanização e a arte da cirurgia neurológica nos distúrbios dos movimentos das doenças raras’ e ‘Lei Geral de Proteção de Dados – LGPD’, aconteceram também mesas redondas para ampliar o debate sobre ‘A importância da educação em saúde na política de atenção integral da pessoa com doença rara e família’, ‘Avaliação biomecânica nas doenças raras’ e ‘Cuidados paliativos’.  

A médica geneticista e presidente do Congresso, Tereza Tavares, explicou que os temas discutidos durante o evento levam mais conhecimento aos participantes e, consequentemente, melhorias no atendimento aos pacientes, especialmente os do Sistema Único de Saúde (SUS).  

“Muitas vezes esses pacientes têm múltiplos acometimentos de sistemas e precisam da atenção de vários profissionais, quer sejam várias especialidades médicas, mas também multiprofissional. Os profissionais que vão dar assistência à família, por exemplo, os psicólogos, têm um papel fundamental nisso, no apoio ao paciente, a família e até ao médico que está atendendo. O assistente social, que tem um manejo maior com aquela família para saber como ela se encontra”, falou Tereza Tavares.  

A especialista também chamou atenção para a iniciativa do apoio da Prefeitura de João Pessoa e afirmou que o envolvimento dos gestores públicos em todas as esferas – municipal, estadual e federal – é de suma importância para o avanço de tomadas de decisões que tragam soluções para as famílias que enfrentam as doenças raras e para o sistema de saúde.  

“É uma iniciativa fantástica. A gente precisa de acessibilidade maior de todos os gestores, em todas as esferas, que ofereçam os medicamentos. Por exemplo, nós temos a Atrofia Medular Espinhal que tem três subtipos, mas o tipo 1, a criança pode ter a falência dos músculos e ela morre até no primeiro ano de vida e existe o medicamento que evita toda a instalação de quadro clínico. Portanto, é uma questão de vida e morte, mas é muito caro e isso acaba sendo judicializado. E quando libera [na Justiça], muitas vezes a criança já pode ter morrido. Precisamos mobilizar todas as estruturas, não só o exame, como o medicamento”, alertou.  

Doenças raras em números – Saionara Araújo, uma das organizadoras do evento, citou que o Brasil tem 3 milhões de pacientes com doenças raras. Desse total, só 5% têm tratamento. Dentro de quase 8 mil doenças raras, nenhuma tem cura. Para ela, a tomada de consciência para o cuidado com esses pacientes e suas famílias é urgente.  

“O principal objetivo de a gente estar aqui discutindo há três dias as doenças raras é exatamente para trazer os olhares das três esferas de governo, como também da sociedade civil organizada, para uma temática que é fato. É para que a gente se qualifique, se capacite para dar a esses pacientes um atendimento qualificado e integral, para que a gente contribua com a qualidade de vida deles, já que cura, infelizmente, a gente não consegue. Para conseguir isso, a gente tem que juntar profissionais que atuam na saúde, com professores que têm as suas disciplinas voltadas para a doença rara, com os residentes e multiprofissionais”, ressaltou.  

Profissionais envolvidos – O IV Conamdracon contou com a participação ativa de diversos profissionais, incluindo médicos, enfermeiros, farmacêuticos, assistentes sociais, psicólogos, dentistas, fonoaudiólogos, terapeutas ocupacionais, educadores físicos, nutricionistas, psicopedagogos, bem como estudantes de graduação e pós-graduação.  

A fonoaudióloga Keila Albuquerque esteve presente no evento durante os três dias e falou sobre a importância do Congresso. “É muito importante que todos os profissionais conheçam as doenças raras, que são diversas, e como tratá-las. A importância é imensurável. E os organizadores do evento estão de parabéns, porque o evento está muito bem organizado, as palestras estão muito grandiosas, informativas, então está perfeito o Congresso”, enfatizou.  

Keila também explicou o papel da fonoaudióloga no acompanhamento aos pacientes com doenças raras. “O fonoaudiólogo trabalha tanto na área da comunicação – os pacientes que têm distúrbio de fala não conseguem se comunicar direito, ele expressa seu desejo, suas vontades – como também com deglutição, com a desfagia. Então, os pacientes que têm dificuldade em mastigar, em deglutir, em sugar, no caso dos bebês. O personal dele trabalha desde o neonato até os idosos, nesses dois distúrbios da comunicação e da alimentação”, esclareceu.  

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