{"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\/nl\/guerreros\/mundo-sin-dravet-es-posible\/","title":{"rendered":"Un mundo sin Dravet es posible"},"content":{"rendered":"[vc_row type=&#8221;in_container&#8221; full_screen_row_position=&#8221;middle&#8221; scene_position=&#8221;center&#8221; text_color=&#8221;dark&#8221; text_align=&#8221;left&#8221; overlay_strength=&#8221;0.3&#8243; shape_divider_position=&#8221;bottom&#8221;][vc_column column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; tablet_text_alignment=&#8221;default&#8221; phone_text_alignment=&#8221;default&#8221; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][vc_row_inner column_margin=&#8221;default&#8221; text_align=&#8221;left&#8221;][vc_column_inner column_padding=&#8221;padding-10-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/4&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][\/vc_column_inner][vc_column_inner column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/2&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/4&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=&#8221;in_container&#8221; full_screen_row_position=&#8221;middle&#8221; scene_position=&#8221;center&#8221; text_color=&#8221;dark&#8221; text_align=&#8221;left&#8221; overlay_strength=&#8221;0.3&#8243; shape_divider_position=&#8221;bottom&#8221;][vc_column column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; tablet_text_alignment=&#8221;default&#8221; phone_text_alignment=&#8221;default&#8221; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][vc_row_inner column_margin=&#8221;default&#8221; text_align=&#8221;left&#8221;][vc_column_inner column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;yes&#8221; content_placement=&#8221;middle&#8221; column_margin=&#8221;default&#8221; text_align=&#8221;left&#8221;][vc_column_inner column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/3&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][image_with_animation image_url=&#8221;15989&#8243; alignment=&#8221;&#8221; animation=&#8221;Fade In&#8221; border_radius=&#8221;10px&#8221; box_shadow=&#8221;none&#8221; max_width=&#8221;100%&#8221;][\/vc_column_inner][vc_column_inner column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;2\/3&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;yes&#8221; content_placement=&#8221;middle&#8221; column_margin=&#8221;default&#8221; text_align=&#8221;left&#8221;][vc_column_inner column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;2\/3&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/3&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;default&#8221; text_align=&#8221;left&#8221;][vc_column_inner column_padding=&#8221;padding-5-percent&#8221; column_padding_position=&#8221;left-right&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;Full Width Line&#8221; line_thickness=&#8221;1&#8243; divider_color=&#8221;default&#8221; animate=&#8221;yes&#8221;][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=&#8221;in_container&#8221; full_screen_row_position=&#8221;middle&#8221; scene_position=&#8221;center&#8221; text_color=&#8221;dark&#8221; text_align=&#8221;left&#8221; top_padding=&#8221;3%&#8221; bottom_padding=&#8221;0&#8243; overlay_strength=&#8221;0.3&#8243; shape_divider_position=&#8221;bottom&#8221; shape_type=&#8221;&#8221;][vc_column column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; tablet_text_alignment=&#8221;default&#8221; phone_text_alignment=&#8221;default&#8221; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][vc_row_inner equal_height=&#8221;yes&#8221; content_placement=&#8221;middle&#8221; column_margin=&#8221;default&#8221; text_align=&#8221;left&#8221; css=&#8221;.vc_custom_1570011994790{margin-right: 5% !important;margin-left: 5% !important;}&#8221;][vc_column_inner column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/4&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][image_with_animation image_url=&#8221;16524&#8243; alignment=&#8221;&#8221; animation=&#8221;Fade In&#8221; border_radius=&#8221;10px&#8221; box_shadow=&#8221;x_large_depth&#8221; max_width=&#8221;100%&#8221;][\/vc_column_inner][vc_column_inner column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;3\/4&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][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=&#8221;in_container&#8221; full_screen_row_position=&#8221;middle&#8221; scene_position=&#8221;center&#8221; text_color=&#8221;dark&#8221; text_align=&#8221;left&#8221; top_padding=&#8221;3%&#8221; bottom_padding=&#8221;0&#8243; overlay_strength=&#8221;0.3&#8243; shape_divider_position=&#8221;bottom&#8221; shape_type=&#8221;&#8221;][vc_column column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; tablet_text_alignment=&#8221;default&#8221; phone_text_alignment=&#8221;default&#8221; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;][vc_row_inner column_margin=&#8221;default&#8221; text_align=&#8221;center&#8221;][vc_column_inner column_padding=&#8221;no-extra-padding&#8221; column_padding_position=&#8221;all&#8221; background_color_opacity=&#8221;1&#8243; background_hover_color_opacity=&#8221;1&#8243; column_shadow=&#8221;none&#8221; column_border_radius=&#8221;none&#8221; width=&#8221;1\/1&#8243; column_border_width=&#8221;none&#8221; column_border_style=&#8221;solid&#8221;]<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 class=\"nectar-love-count\">7<\/span><\/span><\/a><a class='facebook-share nectar-sharing' href='#' title='Share this'>  <i class='fa fa-facebook'><\/i> <span class='social-text'>Share<\/span> <\/a><a class='twitter-share nectar-sharing' href='#' title='Share this'> <i class='fa icon-salient-x-twitter'><\/i> <span class='social-text'>Share<\/span> <\/a><a class='linkedin-share nectar-sharing' href='#' title='Share this'> <i class='fa fa-linkedin'><\/i> <span class='social-text'>Share<\/span> <\/a><a class='pinterest-share nectar-sharing' href='#' title='Pin this'> <i class='fa fa-pinterest'><\/i> <span class='social-text'>Pin<\/span> <\/a><\/div><\/div><\/div>[\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"<p>[vc_row type=&#8221;in_container&#8221; full_screen_row_position=&#8221;middle&#8221; 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column_margin=&#8221;default&#8221;&#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 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...\" \/>\n\t<meta name=\"robots\" content=\"max-image-preview:large\" \/>\n\t<meta name=\"author\" content=\"Luismi Aras\"\/>\n\t<link rel=\"canonical\" href=\"https:\/\/mjn.cat\/nl\/guerreros\/mundo-sin-dravet-es-posible\/\" \/>\n\t\t<meta name=\"generator\" content=\"All in One SEO (AIOSEO) 5.0.5\" \/>\n\t\t<meta 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