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Despu\u00e9s de el diagn\u00f3stico de una enfermedad gen\u00e9tica como el CLCN4 es normal sentir toda una serie de emociones y los padres suelen encontrar que adaptarse a un nuevo diagn\u00f3stico es un momento muy dif\u00edcil de sus vidas.<\/p>\n
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Es importante que sepas que no tienes que recorrer este camino en solitud. Puedes ponerte en contacto con otros padres de ni\u00f1os con CLCN4 a trav\u00e9s de nuestro grupo de apoyo<\/a> en Facebook, para que puedas compartir historias y aprender lo que ha ayudado a otros ni\u00f1os y a sus familias.<\/p>\n [\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb3.25″ custom_padding=\u00bb|||\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/01\/CLCN4-hands.jpg\u00bb alt=\u00bbTratamientos de CLCN4″ title_text=\u00bbCLCN4 hands\u00bb show_bottom_space=\u00bboff\u00bb align_tablet=\u00bbcenter\u00bb align_phone=\u00bb\u00bb align_last_edited=\u00bbon|desktop\u00bb _builder_version=\u00bb4.5.8″ custom_margin=\u00bb0px||||false|false\u00bb animation_style=\u00bbslide\u00bb animation_direction=\u00bbright\u00bb animation_intensity_slide=\u00bb2%\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ admin_label=\u00bbGet 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_builder_version=\u00bb4.5.8″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb29px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.5.8″ custom_padding=\u00bb|||\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.5.8″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb]<\/p>\n Tambi\u00e9n es muy importante saber que, aunque ahora mismo no tenemos una cura para el CLCN4, hay apoyo profesional disponible que har\u00e1 una gran diferencia en la salud, el desarrollo y el bienestar futuro de tu hijo. Las intervenciones tempranas, como la logopedia, la fisioterapia y la terapia ocupacional, ayudar\u00e1n al desarrollo de tu hijo y es importante que se inicien lo antes posible. Hay terapias disponibles para muchas de las complicaciones, como la epilepsia y las dificultades de salud mental, que pueden desarrollarse. El control temprano de la epilepsia puede suponer una gran diferencia en el desarrollo de tu hijo a largo plazo. Para acceder al mejor asesoramiento es importante encontrar el equipo adecuado de m\u00e9dicos y especialistas que os apoyen a ti y a tu hijo: puede incluir especialistas como un neur\u00f3logo, un oftalm\u00f3logo, un psiquiatra y un especialista en ortopedia, as\u00ed como un genetista cl\u00ednico. Tu primer paso<\/strong> Como primer paso, ponte en contacto con tu m\u00e9dico de cabecera o con tu pediatra y facil\u00edtales el enlace a este sitio web y a la p\u00e1gina de profesionales de nuestro sitio web Human Disease Gene Webseries<\/a>: all\u00ed podr\u00e1n ponerse en contacto directamente con nuestras especialistas cl\u00ednicas y cient\u00edficas, la Dra. Emma Palmer y la Dra. Vera Kalscheuer. Puedes encontrar m\u00e1s informaci\u00f3n sobre el apoyo y los pr\u00f3ximos pasos pr\u00e1cticos tras un diagn\u00f3stico gen\u00e9tico que afecte al aprendizaje de los ni\u00f1os aqu\u00ed<\/a> (Reino Unido) o aqu\u00ed<\/a> \/ aqu\u00ed<\/a> (Australia) o aqu\u00ed<\/a> (EEUU).<\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ admin_label=\u00bbVideo\u00bb _builder_version=\u00bb3.22″ background_color=\u00bb#3a897e\u00bb custom_padding=\u00bb0|1px|0|0px|false|false\u00bb collapsed=\u00bboff\u00bb][et_pb_row _builder_version=\u00bb4.5.8″ _module_preset=\u00bbdefault\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.5.8″ _module_preset=\u00bbdefault\u00bb]<\/p>\n [et_pb_divider show_divider=\u00bboff\u00bb _builder_version=\u00bb4.5.8″ _module_preset=\u00bbdefault\u00bb][\/et_pb_divider]<\/p>\n [\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ admin_label=\u00bbGet Involved\u00bb 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apoyo y, en \u00faltima instancia, curas para todas las personas con CLCN4. Un primer paso clave para ayudarnos a conseguir esos objetivos ser\u00e1 conseguir que el mayor n\u00famero posible de familias con CLCN4 de todo el mundo se inscriban en nuestro registro de pacientes. Los registros de pacientes pueden beneficiar a las personas con enfermedades gen\u00e9ticas raras como la CLCN4 por tres razones principales 1. Los registros de pacientes pueden mejorar la atenci\u00f3n al paciente.<\/strong> Estamos construyendo un registro de pacientes digital<\/strong>, moderno<\/strong> y seguro<\/strong> en el que podr\u00e1s contar tu historia o la de tu hijo. Se te invitar\u00e1 a rellenar encuestas que recojan sistem\u00e1ticamente la historia, el momento y el impacto de los s\u00edntomas, y el impacto de cualquier tratamiento. 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toda una serie de emociones y los padres suelen encontrar que adaptarse a un nuevo diagn\u00f3stico es un momento muy dif\u00edcil de sus vidas.<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-2064","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2064","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/comments?post=2064"}],"version-history":[{"count":5,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2064\/revisions"}],"predecessor-version":[{"id":3100,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2064\/revisions\/3100"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media?parent=2064"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}No recorras tu camino de CLCN4 solo<\/h2>\n
\u00danete al registro de pacientes<\/h2>\n
Ponte en contacto. Participa.<\/h2>\n