25 de Septiembre: día Internacional de la Retinosis Pigmentaria

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Desafortunadamente, un año más, las reivindicaciones de la Federación de Asociaciones de Retinosis Pigmentaria de España (F,A,R,P,E,) y de la Fundación Lucha contra la Ceguera (FUNDALUCE), siguen siendo las mismas pues en algunos aspectos, lejos de avanzar, se están experimentado retrocesos y si bien son achacables, en buena medida, a la crisis económica global, no es menos cierto que estamos hablando de un grupo significativo de la población y de sus derechos fundamentales.
Exigimos:

– El compromiso de la administración pública para dedicar fondos a la investigación de las enfermedades heredo degenerativas de la retina.
– La coordinación entre todos los centros donde se investigue sobre estas enfermedades, tanto a nivel nacional como internacional.
– La actuación del Ministerio de Sanidad para que haya un protocolo para el diagnóstico, control y seguimiento, implantado en todo el territorio nacional, junto con la implicación de los servicios de salud de las comunidades autónomas para que dicho protocolo sea viable.
– La implantación de centros de referencia multidisciplinares donde se preste un servicio coordinado e integral, tal y como este grupo de enfermedades requiere.
– Que el diagnóstico genético sea una realidad en todos los hospitales.

Sin embargo, creemos llegado el momento de insistir en otros puntos:

– Es necesario equiparar las enfermedades heredo-degenerativas de la retina, como cuarta causante de ceguera en el mundo y que afecta a todas las edades, con otras enfermedades neurodegenerativas como el Alzheimer o el Parkinson que afectan mayoritariamente a la población de más edad, dado el drama social y familiar que provocan.

– Una buena parte de los afectados, durante periodos más o menos largos de su vida, no cumplen los requisitos necesarios para ser declarados como ciegos legales pese a tener dificultades mas que evidentes para llevar una vida normal. Esto los deja en una situación de total desamparo al no poder recurrir a ninguna institución pública o privada que les ayude y no tener cabida en los conductos normales de la seguridad social al tratarse de una enfermedad incurable y sin tratamiento. Estas personas constituyen grandes desconocidos para la sociedad, lo que provoca su mayor aislamiento. Es imprescindible remediar tal situación.

– Son los mismos afectados, familiares y amigos los que deberían darse cuenta de la necesidad de las asociaciones de afectados y contribuir a ellas, no solo económicamente, sino con iniciativas y personalmente. No solo vivimos una crisis económica, también asociativa.

– Sería de esperar que la reforma de la constitución en su artículo 135, no vaya en detrimento de las subvenciones públicas a las asociaciones sin ánimo de lucro, declaradas de utilidad pública, como son las de afectados por retinosis pigmentaria.

Fdo. F.A.R.P.E. y FUNDALUCE

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