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Saúde

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Saúde

Doenças raras

Com a proposta de aproximar e interagir profissionais e estudantes da área de saúde, associações de pacientes e comunidade com a temática de doenças raras, a AMAVI – Associação MariaVitoria de Atenção aos Familiares e Pacientes de Doenças Raras e Crônicas estará presente no 1° Congresso de Enfermagem do Centro Universitário Uniplan, até o dia 16 de maio.

No ciclo de palestras, o professor Natan Monsores, do Núcleo de Estudos em Saúde Pública (Nesp) da UnB abordará sobre o contexto de doenças raras, bioética e saúde pública – Prof. Natan Monsores, e Sandra Mota, presidente da Associação Pró-cura da ELA e vice-presidente da Amavi, comentará sobre os Desafios dos Pacientes com Esclerose Lateral Amiotrófica-ELA.

Solidariedade

Além disso, durante toda a semana será feita uma mobilização solidária em prol dos pacientes com diagnóstico de Epidermólise Bolhosa-EB, pois serão arrecadados sabonetes, da marca Dove. Os donativos serão entregues para a APPEB – Associação de Parentes, Amigos e Portadores de Epidermólise Bolhosa Congênita. Atualmente, a entidade não recebe incentivos do governo para os sabonetes, apenas para itens utilizados em curativos.

Epidermólise Bolhosa

Também conhecida como EB, é uma deficiência grave, rara, não contagiosa, caracterizada por uma sensibilidade muito acentuada na pele e mucosas, que leva à formação de bolhas na epiderme, especialmente nas áreas de maior atrito, como resposta a qualquer acidente doméstico ou casual e até mesmo a alterações climáticas. Existem três tipos de EB: simples, distrófica e juncional. Além desses, há mais de 20 subtipos de EB.

A patologia ficou conhecida nacionalmente no ano de 2013, quando o neto da coreógrafa Deborah Colker sofreu um ato de discriminação no aeroporto em Salvador. Depois do episódio, foram divulgados alguns desafios para quem tem diagnóstico desta doença. Eles ficam expostos aos riscos de infecções, e desta forma manter a boa higiene estão entre os cuidados permanentes. Além disso, o acesso aos medicamentos, acompanhamento nutricional também são outros obstáculos para o tratamento. E o maior de todos, é que por desconhecimento da sociedade, a EB um dos maiores desafios da doença é que devido ao preconceito, pode gerar isolamento de pacientes, o que acontece na maioria dos casos desde a infância.

Serviço

Os donativos podem ser entregues no Centro Universitário Uniplan, na Avenida Pau Brasil, Lote 2, Águas Claras, de 8h às 21h30.

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