{"id":12,"date":"2015-03-23T19:36:33","date_gmt":"2015-03-23T18:36:33","guid":{"rendered":"http:\/\/www.zivotsesyndromem.cz\/?page_id=12"},"modified":"2023-08-30T15:03:13","modified_gmt":"2023-08-30T13:03:13","slug":"syndrom","status":"publish","type":"page","link":"https:\/\/www.zivotsesyndromem.cz\/?page_id=12","title":{"rendered":"Syndrom"},"content":{"rendered":"<p><span style=\"font-size: 14pt;\"><span style=\"color: #ff0000;\"><strong><br \/>\n<a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/Facebook_cover_2023.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-2693\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/Facebook_cover_2023.jpg\" alt=\"\" width=\"1600\" height=\"592\" \/><\/a>4.12.2022<\/strong> <\/span>vy\u0161el nov\u00fd videoklip, ve kter\u00e9m jsme mohli b\u00fdt jeho sou\u010d\u00e1st\u00ed d\u00edky <a href=\"https:\/\/www.raego.cz\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #ff0000;\"><strong>RAEGO<\/strong><\/span><\/a>\u00a0a projektu<span style=\"color: #ff0000;\"><strong><a href=\"https:\/\/telospribehem.cz\" target=\"_blank\" rel=\"noopener\"> T\u011blo s p\u0159\u00edb\u011bhem<\/a>\u00a0<\/strong><span style=\"color: #000000;\">a<\/span> <\/span><span style=\"color: #000000;\">spolku<\/span><span style=\"color: #ff0000;\">\u00a0\u00a0<a href=\"http:\/\/www.betcs.cz\" target=\"_blank\" rel=\"noopener\"><strong>BeTCS<\/strong><\/a><\/span><\/span><\/p>\n<p><a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/pr\u016fhledn\u00e9_logo-6-e1555243915204.png\"><br \/>\n<img loading=\"lazy\" decoding=\"async\" class=\"wp-image-2245 aligncenter\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/pr\u016fhledn\u00e9_logo-6-e1555243915204.png\" alt=\"\" width=\"429\" height=\"232\" \/><\/a><\/p>\n<p><iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/c2dN_Dl-QHc\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p>\u010cek\u00e1 n\u00e1s dal\u0161\u00ed <span style=\"color: #993366;\"><strong>Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed 28.2. 2023<\/strong><\/span><\/p>\n<p><iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/L9Y9-Pglw8Q\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 18pt;\"><a href=\"https:\/\/faceequalityinternational.org\/\" target=\"_blank\" rel=\"noopener\">Face Equality International<\/a><br \/>\n<img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-2271\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/FEI_Logo_RGB110-1.png\" alt=\"\" width=\"300\" height=\"110\" \/><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt;\"><strong><span style=\"color: #008080;\">Podcast NEEDo TALKs: (Ne)oby\u010dejn\u00e1 holka\u00a0<\/span><\/strong><\/span><\/p>\n<p style=\"text-align: center;\"><iframe loading=\"lazy\" style=\"border-radius: 12px;\" src=\"https:\/\/open.spotify.com\/embed\/episode\/0SacJXCs3wqvxwpLtfWx2v?utm_source=generator\" width=\"100%\" height=\"232\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/pr\u016fhledn\u00e9_logo-6-e1555243915204.png\"><br \/>\n<\/a><span style=\"font-size: 14pt;\">sledujte n\u00e1s a <a href=\"https:\/\/www.betcs.cz\/\" target=\"_blank\" rel=\"noopener\"><strong>pobo\u010dn\u00fd spolek BeTCS<\/strong><\/a><\/span><br \/>\n<a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/pr\u016fhledn\u00e9_logo-6-e1555243915204.png\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2245\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/pr\u016fhledn\u00e9_logo-6-e1555243915204.png\" alt=\"\" width=\"429\" height=\"232\" \/><\/a><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 18pt; color: #000080;\">O tom, jak se \u017eije s Treacher Collins syndromem\u00a0v po\u0159adu \u010cesk\u00e9 televize KL\u00cd\u010c<strong>, kter\u00fd se odvys\u00edlal 14.4.2021<\/strong><strong><br \/>\ncel\u00e9 video v <a href=\"https:\/\/www.ceskatelevize.cz\/porady\/1096060107-klic\/221562221700006\/?fbclid=IwAR3VoGQzkWgPmeN4y3d18eql6eRidPQkacUOrYc5gotsgHGFCjKR8fVd0Y4\" target=\"_blank\" rel=\"noopener\">iVys\u00edl\u00e1n\u00ed ZDE<\/a><\/strong><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt; color: #99cc00;\"><strong><span style=\"color: #000080;\">\u00a0<\/span><\/strong><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"color: #99cc00; font-size: 18pt;\">NOV\u00dd \u010cL\u00c1NEK:\u00a0\u00a0<a href=\"https:\/\/www.zivotsesyndromem.cz\/sance-detem-clanek-o-tcs\/\" target=\"_blank\" rel=\"noopener\">\u0160ance d\u011btem &#8211; \u010dl\u00e1nek o TCS<\/a><\/span><\/p>\n<p><strong><a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2020\/02\/sama-doma-081220141.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2385 size-medium aligncenter\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2020\/02\/sama-doma-081220141-300x168.jpg\" alt=\"\" width=\"300\" height=\"168\" \/><\/a><\/strong><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 18pt;\"><span style=\"color: #ff0000;\">Petra Dunajov\u00e1 <\/span><span style=\"color: #ff0000;\">jako host \u010cESK\u00c9 TELEVIZE, <\/span><span style=\"color: #ff0000;\"><br \/>\n<\/span><span style=\"color: #ff0000;\">v po\u0159adu<\/span><strong><span style=\"color: #ff0000;\"> <a href=\"https:\/\/www.ceskatelevize.cz\/porady\/1148499747-sama-doma\/220562220600019\/video\/748572\" target=\"_blank\" rel=\"noopener\">SAMA DOMA<\/a>, 5.2.2020<\/span><\/strong><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt; color: #800080;\"><a href=\"http:\/\/www.betcs.cz\" target=\"_blank\" rel=\"noopener\"><br \/>\n<\/a><a href=\"http:\/\/www.betcs.cz\" target=\"_blank\" rel=\"noopener\"><br \/>\n<\/a><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 18pt;\"><strong><span style=\"color: #993300;\">V\u00cdC SRDCEM NE\u017d O\u010cIMA<\/span><\/strong><\/span><br \/>\n<iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/L1_9Q-XDD2Q\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt;\"><a href=\"https:\/\/www.betcs.cz\/\" target=\"_blank\" rel=\"noopener\"><strong><br \/>\n<\/strong><\/a><span style=\"color: #000000;\"><br \/>\n<\/span><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt; color: #008000;\"><strong>3. ofici\u00e1ln\u00ed sraz rodin s TCS -11.-13.10.2019<\/strong><\/span><br \/>\n<span style=\"font-size: 14pt; color: #008000;\"><strong>Str\u00e1\u017e nad Ne\u017e\u00e1rkou<br \/>\n<\/strong>v\u00edce info na<strong> www.betcs.cz\u00a0<\/strong><\/span><br \/>\n<a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/sraz-be-tcs.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-2369 size-full\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/sraz-be-tcs-e1576170024448.jpg\" alt=\"\" width=\"1646\" height=\"835\" \/><\/a><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt;\"><span style=\"color: #ff0000;\"><strong>2. ofici\u00e1ln\u00ed sraz rodin s TCS &#8211; 5.-7.4.2019<\/strong><\/span><\/span><br \/>\n<span style=\"color: #ff0000; font-size: 14pt;\"> <strong>Motel Da\u010dice<br \/>\nv\u00edce info na <a href=\"https:\/\/www.betcs.cz\/akce\/\" target=\"_blank\" rel=\"noopener\">www.betcs.cz<\/a><br \/>\n<a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/56334672_2382116845167132_944339282619793408_o-2.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-2275\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/56334672_2382116845167132_944339282619793408_o-2.jpg\" alt=\"\" width=\"1080\" height=\"756\" \/><\/a><br \/>\n<\/strong><\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt;\"><strong>1. <a href=\"https:\/\/www.betcs.cz\/fotogalerie\/\" target=\"_blank\" rel=\"noopener\">ofici\u00e1ln\u00ed sraz rodin s TCS &#8211; 22.9.2018<br \/>\nMoravsk\u00e9 K\u0159\u00ed\u017e\u00e1nky &#8211; Penzion pod B\u00edlou sk\u00e1lou\u00a0<\/a><\/strong><\/span><\/p>\n<p><a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/42450985_2101239203254899_8400482815774294016_o.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-2193 size-full\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/03\/42450985_2101239203254899_8400482815774294016_o.jpg\" alt=\"\" width=\"1080\" height=\"739\" \/><\/a><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-size: 14pt;\">Ne ka\u017ed\u00fd se narodil zdrav\u00fd a kr\u00e1sn\u00fd. Je spousta nemoc\u00ed a druh\u016f posti\u017een\u00ed, o kter\u00fdch se mluv\u00ed tak \u010dasto, \u017ee okam\u017eit\u011b v\u00edte, o co se jedn\u00e1. Nap\u0159\u00edklad Down\u016fv syndrom, autismus, nemoc mot\u00fdl\u00edch k\u0159\u00eddel, \u010di v\u00a0ned\u00e1vn\u00e9 dob\u011b velmi medializovan\u00e1 nemoc ALS. D\u0159\u00edve byli lid\u00e9 s\u00a0jak\u00fdmkoli t\u011blesn\u00fdm \u010di ment\u00e1ln\u00edm \u201eodli\u0161en\u00edm\u201c zav\u00edr\u00e1ni do \u00fastav\u016f, aby od nich byla spole\u010dnost u\u0161et\u0159ena. Dnes je tomu na\u0161t\u011bst\u00ed jinak. Po\u0159\u00e1daj\u00ed se r\u016fzn\u00e9 spole\u010dn\u00e9 akce, benefi\u010dn\u00ed koncerty nebo se nap\u0159\u00edklad fot\u00ed kalend\u00e1\u0159e. Ale hlavn\u011b, tito lid\u00e9 mohou chodit norm\u00e1ln\u011b ven, na proch\u00e1zky, do hospody, na n\u00e1kupy, setk\u00e1vat se se sv\u00fdmi bl\u00edzk\u00fdmi a kamar\u00e1dy.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-size: 14pt;\">My nejsme ob\u010dansk\u00e9 sdru\u017een\u00ed, \u201e\u00f3peeska\u201c ani jin\u00fd typ organizace. Jsme pr\u00e1v\u011b takov\u00e9 holky, kluci, dosp\u011bl\u00ed i d\u011bti, \u010ce\u0161i i Slov\u00e1ci s\u00a0posti\u017een\u00edm. Vypad\u00e1me sice \u201edivn\u011b\u201c, ale rozhodn\u011b se kv\u016fli tomu nehodl\u00e1me schov\u00e1vat. M\u00e1me jedno spole\u010dn\u00e9, a to geneticky podm\u00edn\u011bn\u00e9 posti\u017een\u00ed \u2013 <a href=\"http:\/\/www.zivotsesyndromem.cz\/treacher-collins-syndrom-tcs\/\" target=\"_blank\" rel=\"noopener\"><strong>Treacher Collins syndrom<\/strong><\/a> nebo <strong><a href=\"http:\/\/www.zivotsesyndromem.cz\/goldenhar-syndrom\/\" target=\"_blank\" rel=\"noopener\">Goldenhar syndrom<\/a>.<\/strong> Na\u0161e v\u00fdhoda je, \u017ee jsme lehce zapamatovateln\u00ed, vypad\u00e1me prost\u011b jinak a jsme si navz\u00e1jem hodn\u011b podobn\u00ed. Tak\u017ee, a\u017e n\u00e1s n\u011bkde potk\u00e1te, u\u017e budete v\u011bd\u011bt, pro\u010d tak vypad\u00e1me.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-size: 14pt;\">Tyto webov\u00e9 str\u00e1nky jsme zalo\u017eili, abychom \u0161irokou ve\u0159ejnost sezn\u00e1mili s TCS a GS, pop\u0159. s\u00a0p\u0159\u00edbuzn\u00fdmi syndromy. Co si zde m\u016f\u017eete p\u0159e\u010d\u00edst a vid\u011bt? Na\u0161e p\u0159\u00edb\u011bhy, na\u0161e fotky, na\u0161e spole\u010dn\u00e9 starosti, ale i radosti. Vedle toho zde naleznete informace o obou syndromech, <strong><a href=\"http:\/\/www.zivotsesyndromem.cz\/category\/sluchadla\/\" target=\"_blank\" rel=\"noopener\">o naslouchadlech<\/a><\/strong>, o mo\u017enostech operativn\u00edch z\u00e1krok\u016f a dal\u0161\u00ed <a href=\"http:\/\/www.zivotsesyndromem.cz\/category\/odkazy\/\" target=\"_blank\" rel=\"noopener\"><strong>u\u017eite\u010dn\u00e9 odkazy<\/strong><\/a>.\u00a0Tento port\u00e1l slou\u017e\u00ed tak\u00e9 rodi\u010d\u016fm a zn\u00e1m\u00fdm, kter\u00fdm se narodilo nebo narod\u00ed d\u00edt\u011b s\u00a0t\u00edmhle syndromem a nev\u011bd\u00ed, do \u010deho jdou. Jsou zde kontakty na odborn\u00e9 l\u00e9ka\u0159e a organizace. M\u016f\u017eete samoz\u0159ejm\u011b i oslovit kohokoli z\u00a0n\u00e1s prost\u0159ednictv\u00edm <strong><a href=\"http:\/\/www.zivotsesyndromem.cz\/kontakt\/\" target=\"_blank\" rel=\"noopener\">kontaktn\u00edho formul\u00e1\u0159e<\/a><\/strong>.<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 14pt;\">Spole\u010dn\u011b se m\u016f\u017eeme podporovat a radovat se z\u00a0ka\u017ed\u00e9ho nov\u00e9ho pokroku.<br \/>\n<span style=\"color: #800000;\"><strong>Spole\u010dn\u011b dok\u00e1\u017eeme v\u00edc.<\/strong><\/span><\/span><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/10\/2015_v_Praze.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\" size-medium wp-image-1656 aligncenter\" src=\"https:\/\/www.zivotsesyndromem.cz\/wp-content\/uploads\/2015\/10\/2015_v_Praze-300x225.jpg\" alt=\"2015_v_Praze\" width=\"300\" height=\"225\" \/><\/a><br \/>\nFoto: <strong>Eva, Nelinka a Zuzka\u00a0<\/strong>(Praha, \u00fanor 2015)<\/p>\n","protected":false},"excerpt":{"rendered":"<p> &#8230; <a title=\"Syndrom\" class=\"read-more\" href=\"https:\/\/www.zivotsesyndromem.cz\/?page_id=12\" aria-label=\"\u010c\u00edst v\u00edce o Syndrom\">Read More<\/a><\/p>\n","protected":false},"author":3,"featured_media":2593,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-12","page","type-page","status-publish","has-post-thumbnail"],"_links":{"self":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/pages\/12","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=12"}],"version-history":[{"count":1,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/pages\/12\/revisions"}],"predecessor-version":[{"id":3469,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/pages\/12\/revisions\/3469"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/"}],"wp:attachment":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=12"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}