{"id":15986,"date":"2019-09-30T09:19:29","date_gmt":"2019-09-30T09:19:29","guid":{"rendered":"https:\/\/mjn.cat\/?p=15986"},"modified":"2026-11-11T11:53:30","modified_gmt":"2026-11-11T10:53:30","slug":"mundo-sin-dravet-es-posible","status":"publish","type":"post","link":"https:\/\/mjn.cat\/ca\/guerreros\/mundo-sin-dravet-es-posible\/","title":{"rendered":"Un mundo sin Dravet es posible"},"content":{"rendered":"[vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb overlay_strength=\u00bb0.3&#8243; shape_divider_position=\u00bbbottom\u00bb][vc_column column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-10-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/4&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][\/vc_column_inner][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/2&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]\n<p style=\"text-align: center; line-height: 1.3em;\"><span style=\"color: #999999; font-weight: 200; font-size: 14px;\">Un art\u00edculo de nuestro colaborador\u00a0<a href=\"https:\/\/mjn.cat\/author\/luismiaras\/\">Luismi Aras<\/a><\/span><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/4&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb overlay_strength=\u00bb0.3&#8243; shape_divider_position=\u00bbbottom\u00bb][vc_column column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]<span style=\"font-weight: 400;\">Es dif\u00edcil imaginarse lo que siente un padre con una ni\u00f1a de 4 meses convulsionando en sus brazos mientras espera la llegada de los servicios m\u00e9dicos. Una sensaci\u00f3n de gravedad, de muerte posible, que no desaparece por cientos de crisis que lleves compartiendo con tu hija.<\/span>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner equal_height=\u00bbyes\u00bb content_placement=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bbright\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/3&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][image_with_animation image_url=\u00bb15989&#8243; alignment=\u00bb\u00bb animation=\u00bbFade In\u00bb border_radius=\u00bb10px\u00bb box_shadow=\u00bbnone\u00bb max_width=\u00bb100%\u00bb][\/vc_column_inner][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb2\/3&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]<span style=\"font-weight: 400;\">El S\u00edndrome de Dravet se apoder\u00f3 de nuestra vida, de mi familia, cambiaste el parque por el hospital, la unidad de cuidados intensivos y el miedo permanente. Tardaste a\u00f1os en que los m\u00e9dicos te dieran el diagn\u00f3stico de esta enfermedad rara sin cura ni tratamiento posible.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Lloraste el d\u00eda que te dijeron que los m\u00e1s afortunados convulsionaban cada 7 d\u00edas y los menos afortunados cientos de veces al d\u00eda. Te preguntaste si ser\u00edas capaz de resistirlo y lloraste cada d\u00eda a partir de ese momento, casi siempre en silencio.<\/span>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner equal_height=\u00bbyes\u00bb content_placement=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb2\/3&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]<span style=\"font-weight: 400;\">Creciste en angustia cuando te informaron que el retraso mental severo era la caracter\u00edstica del 60% de los afectados y que solo exist\u00eda un afectado dravet t\u00edpico en el mundo que llevara una vida aut\u00f3noma. Te preguntaste qu\u00e9 ocurrir\u00eda si t\u00fa faltabas<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Te enfadaste con el mundo y reclamaste una vida normal que te correspond\u00eda, pero no te la dieron y te hiciste peque\u00f1o cuando te dijeron que el 16% de los afectados no llegaban a edad adulta.<\/span>[\/vc_column_text][\/vc_column_inner][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/3&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][split_line_heading]\n<h3><b>El s\u00edndrome de Dravet es, desde un punto de vista cient\u00edfico, una enfermedad te\u00f3ricamente curable<\/b><span style=\"font-weight: 400;\">.<\/span><\/h3>\n[\/split_line_heading][\/vc_column_inner][\/vc_row_inner][vc_row_inner column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]<span style=\"font-weight: 400;\">Miraste a tu hija y viste el S\u00edndrome de Dravet, una de las enfermedades neurol\u00f3gicas infantiles m\u00e1s graves existentes. Sin cura, sin tratamiento efectivo.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Pensaste en tu condici\u00f3n de m\u00e9dico y tu educaci\u00f3n cient\u00edfica, le\u00edste, investigaste y descubriste el futuro\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Un mundo sin Dravet era posible.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A pesar de la gravedad de la enfermedad, conocemos la causa y sabemos el mecanismo de enfermedad\u2026 <\/span><b>El s\u00edndrome de Dravet es, desde un punto de vista cient\u00edfico, una enfermedad te\u00f3ricamente curable.<\/b><\/p>\n[\/vc_column_text][divider line_type=\u00bbFull Width Line\u00bb line_thickness=\u00bb1&#8243; divider_color=\u00bbdefault\u00bb animate=\u00bbyes\u00bb][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb top_padding=\u00bb3%\u00bb bottom_padding=\u00bb0&#8243; overlay_strength=\u00bb0.3&#8243; shape_divider_position=\u00bbbottom\u00bb shape_type=\u00bb\u00bb][vc_column column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_row_inner equal_height=\u00bbyes\u00bb content_placement=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb css=\u00bb.vc_custom_1570011994790{margin-right: 5% !important;margin-left: 5% !important;}\u00bb][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/4&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][image_with_animation image_url=\u00bb16524&#8243; alignment=\u00bb\u00bb animation=\u00bbFade In\u00bb border_radius=\u00bb10px\u00bb box_shadow=\u00bbx_large_depth\u00bb max_width=\u00bb100%\u00bb][\/vc_column_inner][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb3\/4&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_column_text]<strong>Luismi Aras <\/strong>-Donostiarra, m\u00e9dico, padre de Nora de 14 a\u00f1os.<\/p>\n<ul>\n<li>Director <a href=\"http:\/\/www.apoyodravet.eu\">Apoyodravet<\/a>.<\/li>\n<li>Director cient\u00edfico de la F<a href=\"http:\/\/www.fedeepilepsia.org\/\">ederaci\u00f3n Espa\u00f1ola de Epilepsia<\/a>.<\/li>\n<li>Asesor de centros de investigaci\u00f3n y tecnol\u00f3gicos.<\/li>\n<li>Promotor de investigaci\u00f3n en el S\u00edndrome de Dravet y la epilepsia refractaria.<\/li>\n<\/ul>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb top_padding=\u00bb3%\u00bb bottom_padding=\u00bb0&#8243; overlay_strength=\u00bb0.3&#8243; shape_divider_position=\u00bbbottom\u00bb shape_type=\u00bb\u00bb][vc_column column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb text_align=\u00bbcenter\u00bb][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb]<div class=\"sharing-default-minimal\"><div class=\"nectar-social default\" data-position=\"left\" data-color-override=\"override\"><div class=\"nectar-social-inner\"><a href=\"#\" class=\"nectar-love\" id=\"nectar-love-15986\" title=\"Love this\"> <i class=\"icon-salient-heart-2\"><\/i><span class=\"love-text\">Love<\/span><span class=\"total_loves\"><span 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shape_divider_position=\u00bbbottom\u00bb][vc_column column_padding=\u00bbpadding-5-percent\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1&#8243; background_hover_color_opacity=\u00bb1&#8243; column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb width=\u00bb1\/1&#8243; tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb&#8230;<\/p>\n","protected":false},"author":8,"featured_media":15989,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[58],"tags":[],"class_list":["post-15986","post","type-post","status-publish","format-standard","has-post-thumbnail","category-guerreros"],"aioseo_notices":[],"aioseo_head":"\n\t\t<!-- All in One SEO 5.0.5 - aioseo.com -->\n\t<meta name=\"description\" content=\"Es 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