Día Mundial de la Fibrosis Quística

Día Mundial de la Fibrosis Quística

En la Argentina nacen de 300 a 400 niños por año con esta afección y sólo el 5% es detectado. El diagnóstico temprano es fundamental para garantizar una mejor calidad de vida del paciente.

El 8 de septiembre se conmemora el Día Mundial de la Fibrosis Quística para concientizar y alentar nuevas investigaciones y posibles curas. Desde Surcos los invitamos a hablar sobre el tema para conocer los síntomas y fundamentalmente para fomentar el diagnóstico precoz y el tratamiento temprano.

La Fibrosis Quística es una enfermedad crónica y hereditaria que representa un grave problema de salud porque es degenerativa y afecta principalmente a los pulmones y al sistema digestivo.

Se trata de una enfermedad de gen recesivo, es decir que si se hereda el gen defectuoso de ambos padres se padecerá la enfermedad, pero si se hereda un gen normal y un gen defectuoso se es portador de la enfermedad sin padecerla, aunque con la posibilidad de transmitirla a la descendencia.

Según estadísticas de la Organización Mundial de la Salud, existe un portador sano cada 25 personas y nace 1 afectado de fibrosis quística cada 2.500 nacidos vivos. En hay aproximadamente 800.000 nacimientos por año, lo que produciría unos 400 nuevos casos de fibrosis quística y existirían 1.680.000 portadores sanos.

El diagnóstico precoz permite un tratamiento temprano de los síntomas y una mejora de la calidad de vida del paciente. Las parejas que han tenido un hijo afectado por esta enfermedad deben recibir un asesoramiento genético antes de programar un próximo embarazo dado que pueden tener otro niño con esta patología.

¿Cuáles son los síntomas?

– Retraso en el crecimiento.

– Incapacidad para aumentar de peso normalmente durante la niñez.

– Ausencia de deposiciones durante las primeras 24 a 48 horas de vida.

– Piel con sabor salado (otro método para diagnosticar la Fibrosis Quística es el test del sudor).

Por la acumulación de mocos en los pulmones, los pacientes de Fibrosis Quística suelen padecer infecciones respiratorias frecuentes. Asimismo, las secreciones pueden obstruir el pancreás, afectando su funcionamiento y con el tiempo pudiendo causar diabetes. También afecta otros órganos del tubo digestivo, dificultando la alimentación y provocando diarreas y malnutrición.

¿Cómo se trata?

El tratamiento de la Fibrosis Quística se basa en tres pilares fundamentales: conseguir una nutrición adecuada, utilizar medicamentos que luchen contra la infección e inflamación respiratorias y realizar con regularidad la terapia física que consiste en fisioterapia respiratoria, ejercicios de fortalecimiento de la musculatura del tórax para prevenir deformidades y la práctica de algún deporte.

En el marco del Día Mundial de la Fibrosis Quística se organizará una campaña de concientización en redes sociales para que los laboratorios sigan investigando más tratamientos y posibles curas. Los [email protected] en adherir deben publicar una foto con el texto: “Queremos la cura para todas las mutaciones de Fibrosis Quística”

Omar Suárez

Formado en la Universidad de Bs. As - Desde chico descubrió su vocación por el periodismo - Hace 30 años trabaja en distintos medios de comunicación regionales y actualmente conduce el programa Vuelta a Casa por FM Frecuencia - es parte del quipo periodístico de TigreVisión - Programa partidario del club atlético Tigre, y Director, creador y propietario de www.alternativaenpapel.com.ar.

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