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El 8 de septiembre es el día mundial de la Fibrosis Quística

5 septiembre, 2020 335
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El 8 de septiembre conmemorarán el Día de la Fibrosis Quística y en ese marco el mensaje principal de la fecha es que la gente done órganos, para salvar vidas. En nuestra provincia se presentan casos en 10 de los 17 departamentos que la componen, de los cuales el 58 por ciento son niños y cada vez llegan más jóvenes a la necesidad de un trasplante bipulmonar para poder sobrevivir, lo que no representa la cura de la misma. La Asociación Alguien Como Yo FQ, trabaja en Entre Ríos durante todo el año, para concientizar sobre la enfermedad y ayudar a quienes tienen que convivir con ella.

El 8 de septiembre es el Día Mundial de la Fibrosis Quística. En Entre Ríos como en todo el país conmemora y como mensaje destacan la necesidad de que la gente done órganos, para salvar vidas, entre ellos los cuatro pacientes de la entidad que están en lista de espera para ser transplantados.

Desde el 2001, el 8 de septiembre está declarado el “Día Nacional de la Fibrosis Quística”; y a partir del 2013 la Organización Mundial de la Salud (OMS) ha declarado que se decrete como el “Día Mundial de la Fibrosis Quística”.

El objetivo es concienciar y sensibilizar a la población sobre la situación y necesidades de los pacientes que sufren FQ y eliminar las desigualdades en el acceso a los tratamientos para, de esta manera, mejorar la calidad de vida de los afectados.

En los últimos años la población ha conocido un poco más sobre fibrosis quística aunque hace falta mucha más difusión. Para poder detectarla a tiempo es necesario tener claro cuáles son sus síntomas y esto es muy importante ya que no siempre los signos son tan evidentes.

En Paraná funciona Alguien como yo FQ, ong que tiene como principales objetivos ayudar y acompañar a los pacientes que padecen fibrosis quística y sus familias, difundir sobre esta enfermedad, asesorar legalmente frente a obras sociales que se niegan a cubrir sus tratamientos, generar difusión sobre la patología y concientizar en la donación de órganos, registró AIM. Quienes necesiten apoyo y ayuda para enfrentar esta enfermedad pueden comunicarse con sus voluntarios.

Alguien como yo Fq nació en 2010 cuando su presidenta y fundadora, Fátima Heinze, sufrió una crisis por la enfermedad y cayó internada en terapia intensiva en la ciudad de Paraná.

Su estado crítico y el comienzo de un deterioro notorio, hizo que la enfermedad comenzara a progresar de manera intensa, bajando de peso y comenzando a ser oxigenodependiente.

El desconocimiento de los profesionales de la salud en la provincia respecto a esta patología, le provocó la necesidad de crear una ong de apoyo al paciente y su familia, y realizar tareas de difusión y concientización sobre la fibrosis quística, tanto para la comunidad como para los médicos; también, brindar asesoramiento legal ya que las obras sociales se negaban a cubrir los diferentes tratamientos y medicaciones.

Es así que a fines de 2010 se concretó la creación de Alguien como yo, FQ, teniendo como socios fundadores a padres y algunos profesionales, que se avocaron al desarrollo de diferentes actividades. Años más tarde, Fatima recibió un trasplante bipulmonar y hoy se encuentra en excelente estado de salud.

Desde ese entonces, la organización trabaja incansablemente por las personas con esta enfermedad y ayudando sus familias.

Por lo que quienes hayan sido diagnosticados pueden acercarse a la sede de Alguien como yo, para recibir información, contención o lo que sea necesario.

La ong funciona en La Rioja 331 depto 11 (Paraná). El teléfono es Llamar 0343 15-500-0111.

Objetivos

Quienes se acerquen se encontrarán con ayuda a los pacientes que padecen fibrosis quística y sus familias.

Además, trabajan para asegurar y garantizar que reciban la medicación y tratamiento adecuados y dirigir y recomendar a los diferentes centros multidisciplinarios que hay en el país especializadas en fq.

Asimismo, la ong colabora para que cada paciente pueda obtener el CUD (Certificado de Discapacidad) ya que se trata de una enfermedad crónica; que las obras sociales respectivas cumplan con la entrega de medicación y prestaciones. Acompañar al paciente en el proceso de la enfermedad, y cubrir otras necesidades; difundir y concientizar sobre la enfermedad, la donación de órganos y trasplante y capacitar a profesionales de la salud a través de la organización de diferentes talleres y capacitaciones, asistiendo a congresos referidos a la temática respiratoria y fibrosis quística.

¿Qué es la fibrosis quística?

La fibrosis quística es una enfermedad genética, hereditaria y con discapacidad visceral permanente que, hasta el momento, no tiene cura.

Es una de las patologías más comunes en la raza blanca y se caracteriza por producir una secreción externa anormal, viscosa y adherente (moco), que se va juntando en los órganos más importantes como pulmón o páncreas, principalmente, con una expectativa de sobrevida de 40 años y, en muchos casos, se necesita de un transplante bipulmonar para poder superarla.

Tiene más de 1800 mutaciones, por lo que en cada paciente se manifiesta de manera diferente.

¿A quiénes afecta? ¿Cómo se manifiesta?

Constituye la enfermedad hereditaria más frecuente de la raza blanca, afectando a 1 de cada 2500 niños nacidos vivos. En la raza blanca una de cada 25 personas es portadora de una mutación en el cromosoma número 7, aunque no padezca la enfermedad. En la Argentina nacen de 300 a 400 niños por año con ésta afección y sólo el 5% es detectado.

Se manifiesta desde el nacimiento, y se la confunde con la enfermedad celíaca por los problemas de nutrición que involucra y con otras enfermedades respiratorias.

¿Cuáles son sus síntomas?

Sudor salado: por la afectación de las glándulas sudoríparas.

Síntomas pulmonares: Consistentes en tos con expectoración, con infecciones respiratorias frecuentes que deterioran la capacidad respiratoria.

Síntomas nasales: Con rinitis, sinusitis y poliposis nasal.

Síntomas digestivos en un alto porcentaje de pacientes, con la presencia de insuficiencia pancreática y mala absorción de las grasas, que llevan a un deterioro del estado nutricional originándose también diabetes.

Infertilidad en los hombres por azoospemia obstructiva y disminución de la fertilidad en las mujeres.

¿Cómo se detecta la fibrosis quística?

Existen dos estudios fundamentales para detectar la Fibrosis Quística: La Pesquisa Neonatal, que consiste en la extracción de una muestra de sangre del recién nacido, y el Test del Sudor, que mide la concentración de cloro en el sudor del paciente como síntoma de la enfermedad.

¿Sabías que…quienes padecen FQ no pueden mantener contacto entre sí, porque se contagian las diferentes bacterias y las mismas se hacen resistentes a los antibióticos.

Deben usar barbijo en presencia de otro FQ en el lugar, mantener siempre una distancia prudencial de 1 metro y utilizar alcohol en gel.

Deben entrar a hospitales centros de salud clínicas con barbijo para no contagiarse alguna bacteria y enfermedad intrahospitalaria.

Deben beber mucha agua ya que su sudor es muy salado y se deshidratan rápidamente.

Comer comidas híper calóricas y saladas.

A determinado tiempo, los pacientes FQ sufren de diabetes.

Deben tomar enzimas pancreáticas antes de cada comida, que ayudan a absorber vitaminas, minerales y grasas y hacen que puedan engordar.

La actividad física ayuda a expandir sus pulmones y limpiarse de la mucosidad que le crea infecciones recurrentes.

Los pacientes FQ se internan entre dos y cuatro veces al año para hacer una toilette (limpieza pulmonar) con antibióticos endovenosos, nebulizaciones, kinesiología y una dieta nutricional hiper calórica, diferentes análisis y estudios de control.

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