La invisibilidad social lleva al aislamiento emocional

Almudena Amaya sufre retinosis pigmentaria. Si alguien tiene dudas, ella lo aclara sin circunloquios ni tecnicismos: «Eso quiere decir que me voy quedando ciega, aunque ahora mismo me apaño y estoy trabajando en la ONCE». Desde la sexta planta de su sede central en Valencia, la delegada en la Comunitat Valenciana de la Federación Española de Enfermedades Raras explica la cara oculta de las enfermedades raras o poco frecuentes, como ella prefiere llamarlas. «La invisibilidad social —dice— provoca aislamiento emocional, afectivo y también social. Me refiero a las administraciones públicas, los laboratorios farmacéuticos, el sistema sanitario, el sistema educativo o los recursos de Bienestar Social».

En la parte más personal, Almudena precisa que «con el diagnóstico, no enferma sólo el afectado, sino todo su entorno familiar. Porque este tipo de enfermedades implica un sobreesfuerzo continuo en el día a día». Porque los efectos secundarios de las enfermedades raras son decepcionantes. «Sientes mucha impotencia cuando te reúnes con un laboratorio farmacéutico que te escucha porque has concertado la entrevista, pero que enseguida te das cuenta de que no les interesas. Porque no somos rentables para ningún tipo de organización. A veces no tenemos ningún medicamento. Y entonces nos hacen medicamentos huérfanos específicos, pero ha de ser con la ayuda del sistema público sanitario y suele costar mucho para que este fármaco te llegue en tiempo y forma».

Ella aboga por que las administraciones «suplan estas carencias en la medida de lo posible». Su catálogo de reivindicaciones lo enumera de un tirón: «la información y sensibilización de la sociedad en estas patologías; un apoyo a la investigación; la visibilidad de los afectados de enfermedades poco frecuentes; la creación de un protocolo de emergencias para personas con enfermedades poco frecuentes en los servicios de urgencias, para atenderlos como necesitan, y el compromiso de las autoridades.

Fuente: levante-emv.com

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