{"id":9786,"date":"2024-02-29T07:56:01","date_gmt":"2024-02-29T07:56:01","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2024\/02\/29\/sindrome-dravet-ruleta-rusa-que-amenaza-emma-516-ninos-espana-5223028\/"},"modified":"2024-02-29T07:56:01","modified_gmt":"2024-02-29T07:56:01","slug":"sindrome-dravet-ruleta-rusa-que-amenaza-emma-516-ninos-espana-5223028","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2024\/02\/29\/sindrome-dravet-ruleta-rusa-que-amenaza-emma-516-ninos-espana-5223028\/","title":{"rendered":"S\u00edndrome de Dravet, la rara epilepsia que pone en riesgo la vida de Emma y otros 516 ni\u00f1os en Espa\u00f1a: \u00abEstamos siempre alerta\u00bb"},"content":{"rendered":"<p>Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<div>\n<p><b>Emma tiene casi 11 a\u00f1os <\/b>y rondaba los seis meses de edad cuando sufri\u00f3 su primera crisis. Poco despu\u00e9s le diagnosticaron <b>s\u00edndrome de Dravet<\/b>, una enfermedad poco frecuente provocada por una<b> encefalopat\u00eda <a href=\"https:\/\/www.20minutos.es\/minuteca\/epilepsia\/\" title=\"Epilepsia\" target=\"_blank\" rel=\"noopener\">epil\u00e9ptica<\/a> muy severa<\/b> que, adem\u00e1s de retraso cognitivo, provoca crisis epil\u00e9pticas resistentes a la medicaci\u00f3n, generalmente precedidas de fiebre, que pueden desencadenar una &#8216;<b>muerte s\u00fabita<\/b>&#8216;. \u00abUna ruleta rusa\u00bb que sus padres quieren combatir con m\u00e1s investigaci\u00f3n.<\/p>\n<p>\u00abLa muerte s\u00fabita<b> es el mayor peligro y nuestro peor miedo<\/b>\u00ab, explic\u00f3 a Servimedia Ximo Peris, padre de Emma, que lamenta que su hija no puede salir a la calle \u00abpara evitar luces brillantes, golpes o subidas dr\u00e1sticas de temperatura que desencadenen una crisis\u00bb.<\/p>\n<p>\u00abEstamos alerta de continuo\u00bb, se\u00f1al\u00f3 Simo, que se turna con su esposa para cuidar a Emma por la noche. Ingeniero de profesi\u00f3n, Ximo invent\u00f3 unas <b>pulseras que cambian de color cuando aparece la fiebre<\/b>, \u00aba fin de adelantarnos a las crisis. Para nosotros, cada d\u00eda es una ruleta rusa\u00bb. <\/p>\n<p><b>Emma no lee ni escribe<\/b>, aunque s\u00ed asiste al colegio, donde recibe los apoyos que precisa. Est\u00e1 matriculada en un centro ordinario pr\u00f3ximo a un centro de salud de su Gabarda natal, en la provincia de Valencia. \u00abExiste una gran coordinaci\u00f3n entre ambos centros\u00bb, indica Ximo. \u00abAhora mismo Emma est\u00e1 estabilizada, prosigue, pues sufre dos crisis graves al a\u00f1o, pero hubo \u00e9pocas peores\u00bb.<\/p>\n<h2>La esperanza<\/h2>\n<p>Seg\u00fan detalla, el \u00edndice de mortalidad entre estos pacientes es muy alto debido a esas crisis. \u00ab<b>La esperanza est\u00e1 en la investigaci\u00f3n\u00bb<\/b> y por eso, Ximo y Elena -madre de Emma- han lanzado una campa\u00f1a de \u2018crowdfunding\u2019 destinada a conseguir fondos, bajo el lema &#8216;Emma y los 516 ni\u00f1os del Dravet&#8217;.<\/p>\n<p>Su prop\u00f3sito es <b>financiar un proyecto en fase piloto<\/b> que lleva a cabo el Centro de Investigaci\u00f3n de la Universidad de Navarra, cuyo objetivo es desarrollar una<b> terapia g\u00e9nica<\/b> capaz de curar esta enfermedad.<\/p>\n<p>Hasta la fecha existen solo<b> dos f\u00e1rmacos espec\u00edficos<\/b> para el s\u00edndrome de Dravet, que \u00absolo tratan los s\u00edntomas, pero no ofrecen una cura definitiva. Esta terapia puede ser una soluci\u00f3n y parece prometedora\u00bb, insiste Ximo. \u00abDesde luego, no es seguro que pueda curar a Emma\u00bb, admite, pero \u00absi a otros ni\u00f1os y contribuir\u00eda a mejorar la calidad de vida de muchos\u00bb. <\/p>\n<p>De cara al<b> D\u00eda Mundial de las <a href=\"https:\/\/www.20minutos.es\/salud\/minuteca\/enfermedades-raras\/\" title=\"Enfermedades raras\" target=\"_blank\" rel=\"noopener\">Enfermedades Raras<\/a><\/b>, Ximo y Elena animan a toda la ciudadan\u00eda a donar \u00ablo que sientan de coraz\u00f3n\u00bb para ayudar a la investigaci\u00f3n, por \u2018Emma y por los 516 ni\u00f1os del Dravet\u00bb.<\/p>\n<\/div>\n<p>Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5223028\/0\/sindrome-dravet-ruleta-rusa-que-amenaza-emma-516-ninos-espana-5223028\/<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El s\u00edndrome de Dravet es una encefalopat\u00eda epil\u00e9ptica muy severa que puede desencadenar una &#8216;muerte s\u00fabita&#8217;.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-9786","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - 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