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Vivir con las consecuencias de la poliomielitis y el Síndrome Postpoliomielítico

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Hoy en día no está reconocido como un grave problema de salud. No somos visibles para el conjunto de la sociedad. En muchas ocasiones confundidos con otras patologías. Sin embargo las personas víctimas de las epidemias de los año 50 y 60 logramos alcanzar una estabilidad después de las numerosas operaciones a las que fuimos sometidos y de las iniciales sesiones de rehabilitación. Sesiones que concluyeron con la desaparición de las unidades de polio de los hospitales.

La gran mayoría hemos conseguido una integración laboral, superando barreras, sociales, en el transporte, etc. No cabe duda que el progreso, los avances técnicos y tecnológicos  nos han ayudado mucho a superar nuestros problemas de movilidad.

Tras años de estabilidad volvemos a encontrarnos con nuevos síntomas que alteran e influyen en nuestra calidad de vida. La respuesta que nos encontramos cuando acudimos a la sanidad es de ignorancia reconocida por los profesionales que nos atienden. Es más algunos pretenden hacernos ver que hemos envejecido y que son síntomas normales. Que nos lo digan con 70 años bien pero que te lo digan con 50, eso no. Esas dudas nos han hecho acudir a la búsqueda en internet. Y nos ha facilitado una información muy superior a la que encontramos en nuestros médicos.

Estamos soportando nuevos síntomas múltiples que no  están ayudándonos a mantener una mínima calidad de vida. Ya de por sí, durante toda nuestra vida, hemos tenido que hacer frente a muchos gastos derivados de nuestra escasa movilidad. La compra de zapatos especiales, tutores o corsés para impedir las deformidades en nuestros miembros o columna. Vehículos adaptados, sillas de ruedas eléctricas, scooter etc. Ni que decir la adaptación de nuestras viviendas, o la necesidad de hipotecarnos en comprar viviendas para impedir que nos echaran de ellas en el caso de alquileres.

Cuándo nos hemos dado cuenta que todo esto iba sucediéndonos, muchos no podemos seguir trabajando. En muchos casos está perjudicándonos seriamente. Y el esfuerzo que hemos hecho de integración laboral no se nos está recompensando en ningún modo. Nos vemos en la necesidad de costear abogados que nos defiendan en procesos largos y costosos. En muchas ocasiones están siendo rechazados o reconociendo pensiones mínimas que no dan para vivir. Llevamos toda la vida sangrando económicamente a nuestras familias pero estas no son eternas. Todo esto está comprometiendo nuestra futura calidad de vida.

IMG2El síndrome post-poliomielitis es una enfermedad que se produce después de muchos años en un alto porcentaje de personas que tuvieron poliomielitis paralítica en la infancia. Los principales signos de esta enfermedad es una nueva debilidad de los músculos, cansancio fuera de lo normal, dolor en los músculos y en las articulaciones una gran incomodidad con el frío, calambres, dificultad para dormir, dificultad para respirar y dificultad para tragar. Es una enfermedad que afecta principalmente a la parte motora. Por lo tanto es una enfermedad neuromuscular rara y progresiva. (clasificado en G14 por la OMS en la CIE10).

Este artículo ha sido escrito por Ana Liébanas Serrano (Plataforma por la memoria de las víctimas de la polio) como colaboración con Raras pero no invisibles. Podéis seguirla en el blog

http://postpoliotarragona.blogspot.com.es/

Para más información podéis acudir a estos enlaces (entre muchos otros)

http://lapolioexige.blogspot.com.es/

https://www.facebook.com/lapolioexige?ref=hl

http://blogs.tv3.cat/senseficcio.php?itemid=52832&catid=2393#c

http://www.rtve.es/alacarta/videos/informe-semanal/informe-semanal-polio-contra-olvido/1523426/

http://hispanolusodepolio.blogspot.com.es/

969 pensamientos sobre “Vivir con las consecuencias de la poliomielitis y el Síndrome Postpoliomielítico”

  1. Me siento identificada en este comentario,las dolencias, la poca atencion por parte de los medicos y ver como tevas desmejorando tan rapido te produce una tristeza porque no sabes que futuro te espera .

  2. Mesiento identificada en este comentario,las dolencias,la poca atencion por parte de los medicos y que mi deteriodo es tan rapido que estoy triste pensando que futuro me espera

  3. ESTAOY ATRAVESANDO LOS SINTOMAS DEL SPP Y AQUI EN ARGENTINA NO NOS AYUDAN EN NADA, AL CONTRARIO, NOS COMPLICAN LAS COSAS CON OBSTACULOS Y RETRASOS EN ESTUDIOS O INTERCONSULTAS, PARTICULARMENTE ESTOY MUY CANSADA, Y A VECES, SIENTO QUE LA BATALLA ESTA PERDIDA, ABRAZO

      1. Hola mi nombre es Juanita soy Chilena ,Tengo una secuela de polio en mi pierna derecha tengo mi pierna mas delgada ,corta y mi pie es mas chiquito.tengo que usar plantillas para estabilizar mis caderas y no caminar con tanta cogera ,Me he sometido a muchas operaciones desde pequena y de adulta dos veces .Pero ya tengo 50 anos y me siente con mucho dolor en mi pierna.Pero asi y todo hago todas mis cosas trabajo manejo ,me gusta mucho bailar con mi esposo,Me gustaria conpartir vivencia con otra personas que tengan este problema fisico ysaber de que foma se puede aliviar ese dolor y tratar de tener una vejez lo mas comoda posible.Un abrazo para todos,

  4. Tengo 63 años casi, polio del año y medio SIEMPRE FUIMOS INVISIBLES Y CUANDO ENVEJECEMOS NO NOS PERDONAN QUE QUERRAMOS SEGUIR VIVIENDO A FULL, no tenemos ese derecho, de hecho no podemos hacerlo por las barreras, policiticas, economicas, estructurales, edilicias, etc.
    NO LE DEMOS EL GUSTO ACA ESTAMOS

  5. Hola a todos, yo también padezco el spp desde hace años y es horrible el dolor que siento en todo mi cuerpo. Sobre todo en las caderas y coxis sin que los médicos puedan hacer nada ante el miedo a romperme. Nadie se atreve a tocarnos porque nuestros huesos y músculos son tan frágiles y están tan castigados que si lo intentan nos rompemos como si fuésemos cristal de boemia, por eso tan solo me pueden dar morfina y mas morfina…. No se vosotros, pero yo no se lo que es vivir sin dolor y estoy bastante asustada ante el futuro que nos espera.
    Un abrazo para todos,

  6. me llamo manuela y acabo de cumplir 56 años, con cinco años me dio la poliomielitis y mi vida ha sido un peregrinage a hospitales, me hizieron dos operaciones, me quitaron los musculos de la rodilla izquierda, y me siento como un trapo viejo padezco tantos dolores que no se como poder solportarlos, me jodieron la vida, y nadie sabe comprender mi situacion, encima me dicen que no hago cosas porque no quiero, y eso me supera las fuerzas. tengo un ochenta y siete por ciento de minusvalia y dicen que no me pueden dar una paga, somos marionetas en manos de mucha gente.

    1. Hola podemos contactarnos…mi correo Torres.dotaba@Hotmail….tengo secuelas de polio..igual me siento como un trapo mi pierna tiene poca fuerza me caigo con facilidad..el ortopedista solo terapias y no me sirven estoy muy preocupada..

      1. Hola mi nombre es Juanita soy Chilena ,Tengo una secuela de polio en mi pierna derecha tengo mi pierna mas delgada ,corta y mi pie es mas chiquito.tengo que usar plantillas para estabilizar mis caderas y no caminar con tanta cogera ,Me he sometido a muchas operaciones desde pequena y de adulta dos veces .Pero ya tengo 50 anos y me siente con mucho dolor en mi pierna.Pero asi y todo hago todas mis cosas trabajo manejo ,me gusta mucho bailar con mi esposo,Me gustaria conpartir vivencia con otra personas que tengan este problema fisico ysaber de que foma se puede aliviar ese dolor y tratar de tener una vejez lo mas comoda posible.Un abrazo para todos,

  7. Estuve leyendo los comentarios y el artículo. Mi padre hoy tiene 78 años y estábamos varados sobre la información
    Ahora entiendo el cuadro clínico de mi padre.
    todos opinan pero nadie tiene la certeza de decir lo que está pasando.
    Saludos
    Gerardo

  8. Tengo 23 años y no se que hacer desde los cuatro años me pego la polio… y no me he operado desde ahora, no se si es mejor operarme o no.tengo dolores fuertes insoportable y no se que hacer.que alguien me diga si me opero o no.ya no tengo los huesos completos según la radiografía de mi cadera izquierdo. me ira bien después de la operación o me ira peor. cuantos años viviria con platinas o cuantos años viviria sin platinas.los que han sido operados como se han sentido antes y después de la operación.el doctor no me asegura si todo saldría bien.

  9. Tengo 52 años y tengo polio desde 1 año y hasta que cumplí mis 40 años empedernido a sentir unos inmensos dolores en todo mi cuerpo y mi pie que se me esta deformando porque tengo la polio porquina y hasta ahora me doy cuenta cuantas personas pasamos por el mismo dolor Dios nos ha de ayudar porque Dios no nos da más de lo que no podemos cargar

  10. Hola tengo polio desde 4 anos tengo 41 anos y trabajo 10 horas boy al jimnacio tengo 3 hijos y1 nieta toda mi vida me he mantenido fuerte y se q el dolor es Grande pero lo podemos controlar con la mente si con la mente y ser positivos la esperansa mieve montanas nunca se den x vensidos nunca busquen la yoga y lo mas nuevo la terapia el pilate .naden agua si el sauna .si nunca pierdan la fe me acaban de operar mi rodilla y no pierdo la fe nunca ay que dejarnos venser aunque el dolor emocional acaba mas que el fisico su hermana en la causa

  11. Mi padre falleció en noviembre del año pasado (2016)
    Tras 6.meses de internación y otros 6 más de terapia intensiva.
    Sólo un.medico se animó a decir aue mi padre padecía el síndrome de pos poliomielitis.
    Tras haber pasado por varias clínicas finalmente dejó de sufrir.
    Si alguien necesita detalles favor de contactarme
    Saludos
    Martin

  12. Efektywnosc viagry podawanego za sprawa nas zapomogi w zakresie rehabilitacje przeciwnosci erekcyjnych egzystuje w dniu dzisiejszym jakas z dysponujacych jahwe indeks zaspokojenie niepolskich eksploatatorow. Akuratna diagnoza wybudowana w poprzek lokalnych koneserow w bezplatnych naradach medycznych istnieje w stanie w obfity maniera ulepszyc Twoje lekami na potencje bytowanie seksualne. Nie zwazajac na skostnialymi rozwiazaniami w tym charakterze podajemy tak jak totalnie przygotowana barki mailowa w celu krajowych pacjentow.

  13. Efektywnosc viagrze przedkladanego za pomoca nas odsiecze w obszarze medycyny komplikacyj erekcyjnych istnieje w dniu nowoczesnym jakas z majacych glowny iloraz zaspokojenie nielokalnych nabywcow. Nalezyta diagnoza sklecona dzieki niewlasnych koneserzy w darmowych naradach medycznych istnieje w poziomie w gigantyczny fortel przestawic Twoje apteka internetowa obecnosc zmyslowe. Nie zwazajac na tradycyjnymi wyjsciami w tym charakterze oferujemy podobnie zgola przygotowana wsparcie mailowa gwoli niepolskich pacjentow.

  14. padezco secuela de polio de los 8 meses de vida me afecto mi pierna izquierda nada mas pero ahora con los años se fue afectando mi columna vertebral , caderas etc – osteoporosis.

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