Asociación

QuienesSomos

DOLFA es una asociación (sin ánimo de lucro) de familiares de niñ@s y adolescentes, de toda España, afectados por Fibromialgia (FM), Síndrome de Fatiga Crónica (SFC) o Sensibilidad Química Múltiple (SQM).

Estas enfermedades afectan a un número muy reducido de personas, en adultos entre 2 – 2,5 % de la población, pero en los chic@s estamos hablando de una cifra muy inferior entre un 0.32 – 0.06%, resultando más afectadas las mujeres/chicas (casi un 90-95% de los casos). Por ello, se las puede considerar como Enfermedades Raras.

Cualquiera de estas enfermedades, son muy incomprendidas, y tienen un gran impacto a nivel personal, familiar, social,  psicológico, educativo, laboral o económico. Pero si en los adultos es complejo, para los niñ@s y adolescentes resulta aún más  complicado, por muchas razones, entre otras por la incomprensión de sus compañeros y la complejidad, en muchas ocasiones, de integrarse socialmente al no poder seguir el ritmo de los demás.

Por eso nos parece muy importante apoyar a los chic@s enfermos y a sus familiares, tanto desde una perspectiva emocional, como ofreciéndoles información y prestándoles la orientación necesaria en materia de atención médico-sanitaria y jurídico-laboral-educativa.

Compartir los problemas con otras personas que están pasando por las mismas dificultades puede resultar muy reconfortante. Por eso, queremos facilitar un punto de encuentro e intercambio de experiencias en nuestros Blogs. Y si, de este modo, las experiencias ya vividas por otros y el conocer cómo pudieron resolver o hacer más llevadera su situación, pudiera facilitarles el camino a los que vengan detrás, podremos considerar cumplido uno de nuestros principales objetivos, el apoyo a familiares, a todos los niveles: sociales, médicos, psicológicos y jurídicos.

Teniendo en cuenta el gran rechazo social a estas enfermedades, la incomprensión de muchos médicos, la falta de asistencia especializada pública, el desconocimiento a nivel educativo de las grandes limitaciones de est@s chic@s, además de la falta de intención política para aportar soluciones, principalmente por los recursos que deben invertirse, y el hecho de que afecte a un número tan reducido hace que las compañías farmacéuticas tampoco estén motivadas para invertir en su investigación, dado las pocas probabilidades existentes para recuperar su inversión. Por eso, creemos crucial realizar, con todos los medios a nuestro alcance, una labor divulgativa, que apoyamos con la publicación de artículos científicos, la creación de Blogs para profesionales y la posibilidad de que ellos puedan contactar directamente con expertos que puedan guiarles y asesorarles.

Y por último, y quizás el más importante, nos gustaría ayudar a potenciar las distintas líneas investigación clínica y de tratamientos abiertas en estos momentos, pues quizás puedan llevarnos a la curación de nuestr@s hij@s, o los suy@s, dado que por desgracia estas enfermedades tienen un alto componente genético, hereditario. De hecho, en la asociación hay familias en las que actualmente hay hasta tres generaciones vivas que sufren alguna de estas enfermedades.

Ayudamos a mejorar la calidad de vida de nuestr@s chic@s, para que puedan tener los mismos derechos que el resto, tal y como recoge la Convención Internacional de los Derechos del Niño:

  • Derecho de No Discriminación, que no seamos apartados del grupo por el mero hecho de estar enfermos y no poder seguir el mismo ritmo que los demás.
  • Derecho a una educación, adaptada a nuestras limitaciones.
  • Derecho a la Salud, que no tengamos que sufrir el desprecio de médicos, la falta de recursos o el que no se investigue lo suficiente.
  • Derecho a una calidad de vida digna.

Desde el 15 de Diciembre de 2016, la Asociación DOLFA (Asociación de niñ@s, adolescentes y jóvenes con enfermedades del grupo de Síndromes de Sensibilidad Central) se encuentra inscrita en el Registro Nacional de Asociaciones (RNA) en el Grupo 1 Sección 1 con el número nacional 611764.

DOLFA Capítulo I Estatutos Sellados RNA

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