{"id":30642,"date":"2020-06-23T17:16:45","date_gmt":"2020-06-23T15:16:45","guid":{"rendered":"https:\/\/www.laguiadepamplona.es\/actualidad\/?p=30642"},"modified":"2020-06-23T17:16:45","modified_gmt":"2020-06-23T15:16:45","slug":"la-fachada-de-la-casa-consistorial-se-iluminara-este-martes-de-color-morado-para-celebrar-el-dia-internacional-del-sindrome-de-dravet","status":"publish","type":"post","link":"https:\/\/www.laguiadepamplona.com\/actualidad\/la-fachada-de-la-casa-consistorial-se-iluminara-este-martes-de-color-morado-para-celebrar-el-dia-internacional-del-sindrome-de-dravet\/","title":{"rendered":"La fachada de la Casa Consistorial se iluminar\u00e1 este martes de color morado para celebrar el D\u00eda Internacional del S\u00edndrome de Dravet"},"content":{"rendered":"<p><!--more--><\/p>\n<p>El Ayuntamiento de Pamplona se suma este martes al D\u00eda Internacional del S\u00edndrome de Dravet e iluminar\u00e1 la fachada de la Casa Consistorial de color morado para dar visibilidad esta enfermedad rara. M\u00e1s de 70 edificios y monumentos del pa\u00eds se unir\u00e1n a esta iniciativa que se estima que afecta a uno de cada 16.000 nacimientos, es decir, en torno a unos 2.000 ni\u00f1os y ni\u00f1as en Espa\u00f1a.<\/p>\n<p><script async src=\"\/\/pagead2.googlesyndication.com\/pagead\/js\/adsbygoogle.js\"><\/script><br \/>\n<!-- Noticias La Guia de Pamplona --><br \/>\n<ins class=\"adsbygoogle\"\nstyle=\"display:block\"\ndata-ad-client=\"ca-pub-6943679897239327\"\ndata-ad-slot=\"7048180777\"\ndata-ad-format=\"auto\"><\/ins><br \/>\n<script>\n(adsbygoogle = window.adsbygoogle || []).push({});\n<\/script><\/p>\n<p>El S\u00edndrome de Dravet, tambi\u00e9n conocido como Epilepsia Miocl\u00f3nica Severa de la Infancia, es una dolencia de origen gen\u00e9tico que se encuadra dentro de la familia patol\u00f3gica de las canalopat\u00edas, ya que aproximadamente el 80 por ciento de los pacientes afectados presenta una mutaci\u00f3n en el gen SCN1A. Este s\u00edndrome comienza en el primer a\u00f1o de vida, con crisis desencadenadas por fiebre, seguida de una epilepsia resistente a los f\u00e1rmacos. Adem\u00e1s, ocasiona graves retrasos en el desarrollo cognitivos, motores y del habla, as\u00ed como problemas conductuales. Este D\u00eda Internacional reivindican una mayor agilidad en los procesos de aprobaci\u00f3n de f\u00e1rmacos, como en el caso del Epidyolex que ha mostrado buenos resultados en la reducci\u00f3n de crisis epil\u00e9pticas en pacientes.<\/p>\n<p>El D\u00eda Internacional del S\u00edndrome de Dravet se celebra desde 2014. Creado por la Fundaci\u00f3n S\u00edndrome de Dravet, junto a otras organizaciones internacionales, busca dar mayor visibilidad a esta enfermedad rara para alertar y concienciar a la sociedad de todos los retos y dificultades que tienen las familias con este s\u00edndrome en su d\u00eda a d\u00eda, as\u00ed como de la necesidad de invertir en investigaci\u00f3n para paliar los efectos de esta enfermedad y mejorar la calidad de vida de quienes la sufren.<\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":30644,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-30642","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ayuntamiento-pamplona"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La 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