{"id":819,"date":"2026-08-12T00:09:37","date_gmt":"2026-08-11T22:09:37","guid":{"rendered":"https:\/\/kleefstrasyndrome.com\/?page_id=819"},"modified":"2026-08-18T11:41:43","modified_gmt":"2026-08-18T09:41:43","slug":"sobre-mi","status":"publish","type":"page","link":"https:\/\/kleefstrasyndrome.com\/es\/about-me\/","title":{"rendered":"Acerca de m\u00ed"},"content":{"rendered":"
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Me llamo Katerina Tzimourta (Katerina Tzimourta<\/a>y soy la t\u00eda de Cristina, a quien en junio de 2013 le diagnosticaron el s\u00edndrome de Kleefstra, que es extremadamente raro. En abril de 2016, nuestra peque\u00f1a falleci\u00f3 debido a complicaciones de una infecci\u00f3n respiratoria. <\/p>\n\n\n\n

El motivo por el que comenc\u00e9 a escribir la historia de nuestra vida es porque en 2013, con una r\u00e1pida b\u00fasqueda en internet, no encontrabas por ning\u00fan lado bibliograf\u00eda griega, o al menos experiencias de padres y familiares, sobre este s\u00edndrome. As\u00ed naci\u00f3 la necesidad de crear una peque\u00f1a comunidad. Por un lado, deseaba que fu\u00e9ramos los \u00fanicos en Grecia que hab\u00edan conocido el s\u00edndrome de Kleefstra. Por otro lado, si hubiera al menos una familia m\u00e1s, quer\u00eda que pudiera encontrarnos, saber que hay alguien que entiende y ponernos en contacto. Cuando compartes tu vida con otra persona que tiene el mismo problema o uno similar, ves que hay mejores o peores manejos o algo m\u00e1s en lo que t\u00fa no te has fijado. Puedes ayudar y ser ayudado por una familia que sabe muy qu\u00e9 est\u00e1s pasando y es de alg\u00fan modo reconfortante saber que no eres el \u00fanico que vive todo esto.<\/p>\n\n\n\n

Adem\u00e1s, debido a la rareza del s\u00edndrome, el conocimiento especializado no era, y no siempre es, f\u00e1cilmente disponible, lo que puede retrasar la derivaci\u00f3n para las pruebas gen\u00e9ticas adecuadas.<\/p>\n\n\n\n

Personalmente, las crisis epil\u00e9pticas de Cristina supusieron un detonante para involucrarme en la epilepsia y ahora me dedico a la investigaci\u00f3n<\/a> sobre el electroenc\u00e9falograma para el estudio de enfermedades neurol\u00f3gicas. En mi actividad investigadora estudio el desarrollo y la evaluaci\u00f3n de m\u00e9todos de aprendizaje autom\u00e1tico e inteligencia artificial para apoyar el estudio de enfermedades neurol\u00f3gicas y de otro tipo.<\/p>\n<\/div>\n\n\n\n

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\"\"<\/figure>\n<\/div>\n<\/div>\n\n\n\n

En los \u00faltimos a\u00f1os, el panorama de la investigaci\u00f3n sobre el s\u00edndrome de Kleefstra est\u00e1 cambiando a un ritmo que no exist\u00eda cuando se cre\u00f3 este sitio web.<\/p>\n\n\n\n

Ahora sabemos mucho m\u00e1s sobre el espectro de sus cambios EHMT1<\/em>, el desarrollo y la comunicaci\u00f3n, el sue\u00f1o, la epilepsia, la salud mental y la posible p\u00e9rdida de habilidades. S\u00e9 ahora que no estamos solos en Grecia y espero que lo que les conf\u00edo les d\u00e9 valor, fe y, sobre todo, informaci\u00f3n sobre c\u00f3mo es vivir en Grecia con un hijo que tiene el s\u00edndrome de Kleefstra.<\/p>\n\n\n\n

A\u00fan ahora que nuestro hijo es un \u00e1ngel, me alegra mucho que se pongan en contacto con nosotros. <\/p>","protected":false},"excerpt":{"rendered":"

\u039f\u03bd\u03bf\u03bc\u03ac\u03b6\u03bf\u03bc\u03b1\u03b9 \u039a\u03b1\u03c4\u03b5\u03c1\u03af\u03bd\u03b1 \u03a4\u03b6\u03b7\u03bc\u03bf\u03cd\u03c1\u03c4\u03b1 (Katerina Tzimourta) \u03ba\u03b1\u03b9 \u03b5\u03af\u03bc\u03b1\u03b9 \u03b7 \u03b8\u03b5\u03af\u03b1 \u03c4\u03b7\u03c2 \u03a7\u03c1\u03b9\u03c3\u03c4\u03af\u03bd\u03b1\u03c2 \u03c0\u03bf\u03c5 \u03c4\u03bf\u03bd \u0399\u03bf\u03cd\u03bd\u03b9\u03bf \u03c4\u03bf\u03c5…<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","footnotes":""},"class_list":["post-819","page","type-page","status-publish","hentry"],"yoast_head":"\n\u03a3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03b5\u03bc\u03ad\u03bd\u03b1 - \u03a4\u03bf \u03a3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf Kleefstra<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/kleefstrasyndrome.com\/es\/sobre-mi\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u03a3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03b5\u03bc\u03ad\u03bd\u03b1 - 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