{"id":29688,"date":"2017-12-04T15:04:27","date_gmt":"2017-12-04T14:04:27","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=29688"},"modified":"2017-12-04T15:04:27","modified_gmt":"2017-12-04T14:04:27","slug":"v-liberci-zacala-vystava-fotografii-deti-se-vzacnym-onemocnenim","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=29688","title":{"rendered":"V Liberci za\u010dala v\u00fdstava fotografi\u00ed d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm"},"content":{"rendered":"<p><strong>Jak\u00fd je sv\u011bt d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm a jak je vn\u00edm\u00e1 jejich okol\u00ed, ukazuje libereck\u00e1 v\u00fdstava \u010dernob\u00edl\u00fdch fotografi\u00ed. Zobrazuje d\u00edvky s Rettov\u00fdm syndromem, kter\u00fd zp\u016fsobuje t\u011b\u017ek\u00e9 kombinovan\u00e9 posti\u017een\u00ed. V Liberci v\u00fdstava za\u010dala dnes v d\u00e1rcovsk\u00e9m centru sanaplasma, kter\u00e1 s\u00eddl\u00ed v \u0158eznick\u00e9 ulici v centru m\u011bsta, \u0159ekla Michaela Vrbov\u00e1.<\/strong><!--more--><\/p>\n<p>foto: ilustrace<\/p>\n<p>Na v\u00fdstav\u011b je 28 fotografi\u00ed, na kter\u00fdch je 14 d\u00edvek s touto nemoc\u00ed. &#8222;Jedna fotka je v\u017edy detailn\u00ed a portr\u00e9tn\u00ed, druh\u00e1 zobrazuje kontakt a interakce d\u00edvky s n\u011bk\u00fdm bl\u00edzk\u00fdm &#8211; rodi\u010dem, asistentkou \u010di sourozencem,&#8220; uvedla Vrbov\u00e1. Rodi\u010de k fotografi\u00edm v\u017edy p\u0159ipojili kr\u00e1tkou charakteristiku sv\u00fdch dcer.<\/p>\n<p>Rett\u016fv syndrom je vrozen\u00e9 vz\u00e1cn\u00e9 neurologick\u00e9 onemocn\u011bn\u00ed. Postihuje p\u0159edev\u0161\u00edm d\u00edvky, u kter\u00fdch zp\u016fsobuje t\u011b\u017ek\u00e9 kombinovan\u00e9 posti\u017een\u00ed. V \u010cR je aktu\u00e1ln\u011b diagnostikov\u00e1no kolem 70 d\u00edvek. &#8222;Doposud neexistuje \u017e\u00e1dn\u00e1 \u00fa\u010dinn\u00e1 l\u00e9\u010dba, kter\u00e1 by onemocn\u011bn\u00ed Rett\u016fv syndrom um\u011bla zastavit \u010di vyl\u00e9\u010dit.&#8220; uvedla Vrbov\u00e1. Dostupn\u00e1 je jen l\u00e9\u010dba jednotliv\u00fdch symptom\u016f onemocn\u011bn\u00ed. P\u0159\u00edznaky mohou b\u00fdt r\u016fzn\u00e9 a projevovat se mohou v r\u016fzn\u00e9m \u010dasov\u00e9m obdob\u00ed. Typick\u00e9 je, \u017ee po\u010d\u00e1te\u010dn\u00ed v\u00fdvoj d\u00edt\u011bte s Rettov\u00fdm syndromem je obvykle do \u0161est\u00e9ho a\u017e 18. m\u011bs\u00edce v\u011bku norm\u00e1ln\u00ed. Po obdob\u00ed stagnace se za\u010dne zhor\u0161ovat koordinace a prov\u00e1d\u011bn\u00ed nau\u010den\u00fdch pohyb\u016f, nap\u0159\u00edklad schopnost d\u00edt\u011bte samo se naj\u00edst. Rozv\u00edjej\u00ed se autistick\u00e9 projevy a nabyt\u00e9 \u0159e\u010dov\u00e9 schopnosti se mohou postupn\u011b zcela vytratit. Postupn\u011b se zhor\u0161uje dr\u017een\u00ed t\u011bla i koordinace ch\u016fze.<\/p>\n<p>V\u00fdstavu uspo\u0159\u00e1dala nadace sanafriends ve spolupr\u00e1ci se spolkem Rett Community. Spolek pom\u00e1h\u00e1 rodin\u00e1m d\u00edvek s touto vz\u00e1cnou nemoc\u00ed v cel\u00e9 \u010cR. &#8222;V\u00fdstava vznikla p\u0159edev\u0161\u00edm proto, abychom u \u0161irok\u00e9 ve\u0159ejnosti podn\u00edtili z\u00e1jem o to, co je Rett\u016fv syndrom a jak\u00e9 vlastn\u011b doopravdy jsou \u017eeny a d\u00edvky s t\u00edmto vz\u00e1cn\u00fdm onemocn\u011bn\u00edm,&#8220; uvedla p\u0159edsedkyn\u011b spolku Lenka Kohoutkov\u00e1. Autorkou fotografi\u00ed je Ji\u0159ina \u0160m\u00eddov\u00e1. V\u00fdstava m\u011bla premi\u00e9ru v \u0159\u00edjnu v \u00dast\u00ed nad Labem a postupn\u011b se p\u0159esouv\u00e1 v dvout\u00fddenn\u00edch intervalech po v\u0161ech centrech sanaplasmy. V republice je deset takov\u00fdch center.<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Jak\u00fd je sv\u011bt d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm a jak je vn\u00edm\u00e1 jejich okol\u00ed, ukazuje libereck\u00e1 v\u00fdstava \u010dernob\u00edl\u00fdch fotografi\u00ed. Zobrazuje d\u00edvky s Rettov\u00fdm syndromem, kter\u00fd zp\u016fsobuje <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=29688\" title=\"V Liberci za\u010dala v\u00fdstava fotografi\u00ed d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17310,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-29688","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/29688","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=29688"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/29688\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17310"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=29688"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=29688"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=29688"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}