O Plenário da Assembleia Legislativa de Pernambuco aprovou hoje, em segunda discussão, o Projeto de Lei 1397/2023, de autoria do Deputado João Paulo Costa, que cria a Política Estadual de Assistência à Pessoa com Epidermólise Bolhosa. O Projeto segue agora para sanção do Governo do Estado.
“Dia histórico! Essa Casa acaba de aprovar por unanimidade o nosso Projeto de Lei que assegura os direitos e garante a proteção adequada para pessoas com epidermólise bolhosa, como tratamentos médicos intensivos, acompanhamento psicológico, acesso a medicamentos, insumos e curativos, assegurando todos os seus direitos e garantias. Esse Projeto também tem como objetivo promover a conscientização da sociedade sobre a epidermólise bolhosa, medida essencial para garantir o respeito e a inclusão dos pacientes. Outro ponto muito importante é o acesso gratuito ao transporte público. Gostaria de pedir ao Governo do Estado que sancione com urgência esse Projeto para que possamos, no mais breve possível, garantir uma melhor qualidade de vida para esses pacientes”, comemorou o Parlamentar na Tribuna da Assembleia Legislativa.
No ano passado, João Paulo Costa promoveu uma grande Audiência Pública intitulada “A Proteção e os Direitos da Pessoa com Epidermólise Bolhosa nos Estabelecimentos Educacionais e de Saúde em Pernambuco”, para discutir o papel do Poder Público e ouvir quem, de fato, vivencia a doença. A Audiência também contou com a presença de Gui e Tayane Gandra.
A epidermólise bolhosa é uma doença rara, não contagiosa e ainda sem cura, que fragiliza a pele, fazendo com que surjam feridas e bolhas. A pele normal possui um cimento especial para mantê-la íntegra. Esse cimento é formado por uma proteína chamada colágeno. Ele é responsável pela união das células da camada mais superficial da pele com a camada mais interna. Isso dá resistência a nossa pele proporcionando-lhe uma função protetora. Nas pessoas com epidermólise bolhosa, esse colágeno é ausente ou alterado. Isso leva ao descolamento da pele com formação de bolhas ao mínimo atrito. Por esse motivo as pessoas que vivem com a doença são conhecidas como “Borboletas”, pois a pele se assemelha às asas de uma borboleta por causa da sua fragilidade.
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