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Ana Belén Cañas descubrió que sufre la malformación de Arnold Chiari tras un accidente de tráfico Así supo Ana que sufría una enfermedad rara que cambiaría su vida. Cedida por Ana Belén Cañas
A sus 24 años, Ana Belén Cañas descubrió, a raíz de un accidente de tráfico, que padecía una enfermedad rara. Un dolor intenso en el cuello, del que no se recuperaba desde el impacto, la llevó a acudir al médico. Fue entonces cuando una resonancia magnética, realizada para investigar el origen del dolor, reveló una malformación en el cerebelo: la enfermedad de Arnold Chiari , una condición que afecta a unas 5.600 personas en España.
Aunque esta enfermedad congénita se desarrolla antes de nacer, Ana lo desconocía hasta ese momento. Además, también le diagnosticaron siringomielia, una patología asociada que provoca la formación de un quiste en la médula espinal.
Muchas de las personas que sufren este síndrome lo desconocen durante años , hasta que los síntomas empiezan a brotar: dolores de cabeza muy intensos (sobre todo después de toser, estornudar o hacer esfuerzos, incluso reír) vértigos, problemas de equilibrio, acúfenos, o adormecimiento de algunas partes. Sin embargo, el caso de Ana era distinto: descubrió su enfermedad antes de experimentar estos síntomas .
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“Normalmente, el diagnóstico llega años después de los síntomas porque cuesta que te hagan una resonancia. Aparentemente, todo parece estar bien y muchos pacientes son derivados al psiquiatra, lo que genera incomprensión y mucha frustración”, explica Ana a la web de Informativos Telecinco
Con el diagnóstico llegó la discapacidad y la necesidad de cambiar su vida laboral . Dejó su trabajo, que requería esfuerzo físico y podía agravar su enfermedad, y durante 10 años trabajó como comercial, en la ONCE, y como teleoperadora. Hasta que un día , sin previo aviso, fue la última vez que cogió el teléfono en su puesto de trabajo.
La explosión de los síntomas Aunque Ana sabía que padecía la enfermedad de Arnold Chiari, no había sentido los efectos hasta que, un día, los síntomas irrumpieron como una bomb a. “Estaba tomando algo con los amigos cuando empecé a notar que se me dormía la pierna . Luego la cara, la boca, el brazo, y toda la parte derecha del cuerpo. Comencé a ver doble y a tener problemas musculares en la cara, incluso al hablar”, recuerda.
Fue desde ese momento, a sus 34 años, cuando Ana sintió en sus carnes aquello que le habían comunicado que le habían diagnosticado una década antes. "En un mes ya estaba en una silla de ruedas porque me caía ", relata. Intentó con la muletas y andador, pero los síntomas había avanzado muy rápido.
Ana celebrando su cumpleaños con su padre telecinco.es
Con la discapacidad absoluta reconocida, Ana necesita ayuda para tareas básicas como comer, ducharse, vestirse, limpiar o salir a la calle . “Tengo las terminaciones nerviosas tan dañadas que apenas siento dolor ni sensibilidad. Ya me he acostumbrado a hablar con la boca dormida”, explica.
Actualmente, recibe asistencia domiciliaria de la Comunidad de Madrid dos veces a la semana durante tres horas , pero admite que no es suficiente. Aunque su pareja la apoya en su día a día y es quien más le ayuda, sufre fibromialgia. "Los días que ella se encuentra mal, la casa es un desastre, no me ducho y tengo que pedir comida a domicilio", confiesa Ana.
Ana junto a su pareja Yolanda. Cedida por Ana Belén Cañas
Su situación es grave y especial, pero subraya que otros pacientes también sufren síntomas muy intensos , aunque no siempre tienen reconocida la discapacidad. “Muchos van a trabajar con dolores insoportables, incluso tomando morfina , y vivir así es un infierno”, denuncia Ana, que también es vocal de la Asociación Nacional Amigos de Arnold Chiari (ANAC). Además, señala que existe una cirugía que puede mejorar los síntomas, pero "muchos pacientes no tienen acceso a ella debido al infradiagnóstico de la enfermedad".
Hoy, con 43 años, Ana enfrenta su vida limitada con optimismo. Siempre que puede, sale con sus amigos a tomar una cerveza bien fría, y uno de sus grandes pasatiempos es el ordenador y el uso de gafas de realidad virtual, que le permite "viajar" a otros lugares. Mientras tanto, espera con ilusión mudarse a un piso adaptado de la Comunidad de Madrid para ganar más independencia .
"Pido que se siga investigando y que las terapias lleguen a todos los pacientes, por favor", concluye.
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