iHola chicas y mamas de Turner: como afectada os quiero contar mi experiencia Turner y ser la primera que estrene este apartado de nuestra web.
Mi experiencia Turner comienza a los ocho años cuando me diagnostican en Canadá el síndrome .Ahí empieza un sin fin de periplos por hospitales sin saber muy bien a quien acudir en España para que me haga un seguimiento correcto . Pruebas y mas pruebas hacen que yo no quiera saber nada de inyecciones y hasta les tenga pánico aun hoy en dia .
Poco a poco, al ver que las patologías derivadas de mi síndrome no eran especialmente serias,la situación se normaliza y se les dice a mis padres que con las hormonas de crecimiento y los estrógenos posteriormente llevaría una vida normal sólo revisar con una analítica de sangre la posible afectación del hígado a causa de la ingesta de hormonas y ya está.Llegaron a preguntarme que para que venia cuando iba a las revisiones y al sentirme tan incómoda por esas situaciones dejé de ir y sólo me revisaba lo que me habían dicho que revisara.
El tiempo fue pasando, me licencié en filología Inglesa y comencé a trabajar e iba donde el trabajo me llamaba (Reino Unido, Ceuta, Madrid, Granada, Marbella,Málaga han sido las ciudades donde fui a trabajar) y asi llegué a los 39 y de repente empecé a sentirme mal de las articulaciones, huesos…etc y de nuevo mi periplo por los hospitales y médicos comenzó sin mucho éxito hasta que a los 41 me planté delante de mi médico de familia y le dije que no podia más que no sabía que me pasaba pero que no podía ni subir escalones y me sentia tan mal que era incapaz de ir a trabajar.
Asi, cansada, exhausta,frustrada y sin saber bien que me estaba pasando, ni el verdadero alcance de mi situación, me meti en una operación que me sugirieron los traumatólogos en la que aún continuo inmersa.Poco a poco fui recuperando algo de fuerzas y me dije si toda esta situación estaba relacionada con el síndrome de Turner y me puse a investigar por internet .
La primera sorpresa que recibí fue que no habia asociaciones específicas sobre este síndrome en España y sólo la asociación Crecer me dio una ligera orientación con dos guias :la del profesor gravholt- Know your body en inglés y la del dr. Sigueros Preguntas y Respuestas sobre el síndrome de Turner en español.
De repente todo encajó y con los conocimientos adquiridos sobre el síndrome de Turner fui haciéndome una revisión más adecuada del síndrome, que hicieron que se me diagnosticaran mas patologías que obviamente también me hacian sentir mal .
Y mientras,entre todo este caos, no dejo de tener inspecciones médicas pues las situación en la que estoy es ya de daños irreversibles, y aunque algo podré mejorar, continuo sin poder trabajar y los médicos no dejan de someterme a operaciones.
Esto me preocupa , porque a la delicada situación de salud en la que me encuentro ( de llevar una vida normal a depender cada vez mas de silla de ruedas) se añade que la seguridad social no acepta mi situación de incapacidad laboral y no solventa mi situación económica ¡tantos años trabajando para perder todo lo conseguido por estar enferma y no poder trabajar!
Y lo triste de todo es que un buen seguimiento de la evolución del síndrome en mi hubiera evitado mi situación actual ya que hay tratamientos paliativos siempre a nivel de prevención, no con el daño hecho.
No soy una persona de llorar y no poner soluciones asi que continuo luchando y además de encontrar la asociación de síndrome de Turner Alejandra Grandes que se constituyo hace año y medio , con la cual colaboro,y a la que debo en parte la decisión de montar esta asociación: decidí montar esta asociación y ayudar a corregir los errores y vacios que hay en la seguridad social en España sobre nuestro síndrome y que he sufrido en propia experiencia.
Y esta es mi experiencia. Sólo decir que os animo a exponer vuestra experiencia en nuestro apartado y ayudarnos asi , a través de la vuestra, a identificar los múltiples vacíos que hay sobre nuestro síndrome y asi corregirlos
¡animaos y escribid!
La presidenta de la asociación
Trinidad Rico
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