{"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":"a-propos-de-moi","status":"publish","type":"page","link":"https:\/\/kleefstrasyndrome.com\/fr\/about-me\/","title":{"rendered":"\u00c0 propos de moi"},"content":{"rendered":"
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Je m'appelle Katerina Tzimourta (Katerina Tzimourta<\/a>) et je suis la tante de Christina, chez qui on a diagnostiqu\u00e9, en juin 2013, le syndrome de Kleefstra, une maladie extr\u00eamement rare. En avril 2016, notre petite fille nous a quitt\u00e9s, des suites de complications li\u00e9es \u00e0 une infection respiratoire. <\/p>\n\n\n\n

Si j\u2019ai commenc\u00e9 \u00e0 \u00e9crire l\u2019histoire de notre vie, c\u2019est parce qu\u2019en 2013, apr\u00e8s une recherche rapide sur Internet, on ne trouvait nulle part de documentation en grec, ni m\u00eame de t\u00e9moignages de parents et de proches, concernant ce syndrome. C\u2019est ainsi qu\u2019est n\u00e9 le besoin de cr\u00e9er une petite communaut\u00e9. D\u2019un c\u00f4t\u00e9, j\u2019esp\u00e9rais que nous soyons les seuls en Gr\u00e8ce \u00e0 avoir \u00e9t\u00e9 confront\u00e9s au syndrome de Kleefstra. D\u2019un autre c\u00f4t\u00e9, s\u2019il existait ne serait-ce qu\u2019une seule autre famille, je voulais qu\u2019elle puisse nous trouver, qu\u2019elle sache qu\u2019il y a quelqu\u2019un qui la comprend et que nous puissions entrer en contact. Quand on partage sa vie avec quelqu\u2019un d\u2019autre qui a le m\u00eame probl\u00e8me ou un probl\u00e8me similaire, on se rend compte qu\u2019il existe de meilleures ou de moins bonnes fa\u00e7ons de g\u00e9rer la situation, ou encore des aspects suppl\u00e9mentaires auxquels on n\u2019avait pas pr\u00eat\u00e9 attention. Tu peux aider et \u00eatre aid\u00e9 par une famille qui sait tr\u00e8s bien ce que tu traverses, et c\u2019est quelque peu r\u00e9confortant de savoir que tu n\u2019es pas le seul \u00e0 vivre tout cela.<\/p>\n\n\n\n

De plus, en raison de la raret\u00e9 de ce syndrome, les connaissances sp\u00e9cialis\u00e9es n'\u00e9taient pas, et ne sont pas toujours, facilement accessibles, ce qui peut retarder l'orientation vers un test g\u00e9n\u00e9tique appropri\u00e9<\/p>\n\n\n\n

Personnellement, les crises d'\u00e9pilepsie de Christina m'ont incit\u00e9 \u00e0 m'int\u00e9resser \u00e0 l'\u00e9pilepsie et je m'occupe d\u00e9sormais de la recherche<\/a> sur l'\u00e9lectroenc\u00e9phalogramme pour l'\u00e9tude des affections neurologiques. Dans le cadre de mes activit\u00e9s de recherche, j'\u00e9tudie le d\u00e9veloppement et l'\u00e9valuation de m\u00e9thodes d'apprentissage automatique et d'intelligence artificielle destin\u00e9es \u00e0 faciliter l'\u00e9tude des troubles neurologiques et d'autres pathologies.<\/p>\n<\/div>\n\n\n\n

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

Ces derni\u00e8res ann\u00e9es, le paysage de la recherche autour de Kleefstra \u00e9volue \u00e0 un rythme qui n'existait pas lorsque ce site web a \u00e9t\u00e9 cr\u00e9\u00e9.<\/p>\n\n\n\n

Nous en savons d\u00e9sormais beaucoup plus sur l'\u00e9ventail de ses variations EHMT1<\/em>, le d\u00e9veloppement et la communication, le sommeil, l'\u00e9pilepsie, la sant\u00e9 mentale et la perte \u00e9ventuelle de certaines capacit\u00e9s. Je sais d\u00e9sormais que nous ne sommes pas seuls en Gr\u00e8ce et j\u2019esp\u00e8re que ce que je vous confie vous donnera du courage, de la foi et surtout des informations sur ce que c\u2019est que de vivre en Gr\u00e8ce avec un enfant atteint du syndrome de Kleefstra.<\/p>\n\n\n\n

M\u00eame si notre enfant est d\u00e9sormais un petit ange, je serais tr\u00e8s heureuse que vous preniez contact avec nous. <\/p>","protected":false},"excerpt":{"rendered":"

Je m'appelle Katerina Tzimourta et je suis la tante de Christina, qui, en juin\u2026<\/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\/fr\/a-propos-de-moi\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\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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