Daniel Kroneberger, coautor del proyecto de ley sobre fibrosis quística, celebró que el Senado de la Nación, a través de un plenario de comisiones, comience con el debate sobre un tema de ampliación de derechos, que refleja años de lucha de familias y fundamentalmente de personas con fibrosis quística. El proyecto ya tiene sanción en la Cámara de Diputados.
“Dimos media sanción al proyecto 0866/18 en diputados a fines de 2019, el cual declara de interés nacional la lucha contra la enfermedad de fibrosis quística de páncreas o mucoviscidosis, entendiéndose por tal a la detección e investigación de sus agentes causales, el diagnóstico, tratamiento, su prevención, asistencia y rehabilitación, incluyendo la de sus patologías derivadas, como así también la educación de la población respecto de la misma”, dijo el exdiputado nacional por el radicalismo
La presente ley tiene por finalidad establecer el régimen legal de protección, de atención de salud, trabajo, educación, rehabilitación, seguridad social y prevención, para que las personas con fibrosis quística de páncreas o mucoviscidosis alcancen su desarrollo e inclusión social, económica y cultural, conforme lo previsto en la Constitución Nacional.
“Asimismo, por tratarse de una discapacidad visceral que no tiene cura, contarán con una protección integral no solo a nivel diagnóstico y tratamiento médico desde el nacimiento, sino a todo nivel para lograr su adecuada integración social”, indicó
La fibrosis quística (mucoviscidosis) es una enfermedad genética multiorgánica, que afecta al sistema respiratorio y digestivo.
Los pacientes que padecen esta patología presentan frecuentemente infección pulmonar crónica y dificultades nutricionales debido a su insuficiencia pancreática. Los síntomas más comunes son la dificultad para respirar, la mucosidad densa y viscosa, y las altas concentraciones de sal en el sudor.
La fibrosis quística provoca una discapacidad visceral permanente que daña y limita la función de algunos órganos internos, principalmente páncreas, pulmón, hígado e intestinos, y que es padecida desde su nacimiento por quienes la sufren.
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66 thoughts on “Fibrosis quística: Kroneberger celebró que el Senado avance sobre su proyecto”
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