{"id":26602,"date":"2016-10-19T10:07:44","date_gmt":"2016-10-19T08:07:44","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=26602"},"modified":"2016-10-19T10:07:44","modified_gmt":"2016-10-19T08:07:44","slug":"deti-postizene-ichtyozou-mely-sraz-v-milesove","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=26602","title":{"rendered":"D\u011bti posti\u017een\u00e9 ichty\u00f3zou m\u011bly sraz v Mile\u0161ov\u011b"},"content":{"rendered":"

V malebn\u00e9m prost\u0159ed\u00ed Li\u0161kova Ml\u00fdna v Mile\u0161ov\u011b se konal druh\u00fd sraz „Icht\u00fdlk\u016f“. Osloven\u00ed icht\u00fdlek nen\u00ed nad\u00e1vka, jak by se mohlo zd\u00e1t, ale ozna\u010den\u00ed pro d\u011bti, kter\u00e9 se pot\u00fdkaj\u00ed s onemocn\u011bn\u00edm naz\u00fdvaj\u00edc\u00edm se ichty\u00f3za.<\/strong><\/p>\n

Mile\u0161ov \u2013 Pro tyto d\u011bti, ale i pro dosp\u011bl\u00e9 byl v \u00fanoru v leto\u0161n\u00edho roku zalo\u017een Spolek Ichty\u00f3za, pod veden\u00edm Hany Kadlecov\u00e9, p\u0159edsedkyn\u011b spolku, kter\u00fd m\u00e1 i sv\u00e9 webov\u00e9 str\u00e1nky \u2013 ichtyoza.cz. Tam je mo\u017en\u00e9 nal\u00e9zt mnoho informac\u00ed, rad a p\u0159\u00edb\u011bh\u016f konkr\u00e9tn\u00edch d\u011bt\u00ed posti\u017een\u00fdch touto nemoc\u00ed.<\/p>\n

Velkou oporou v boji s touto nemoc\u00ed, kterou trp\u00ed i jej\u00ed syn Mart\u00ednek, je Hana, jej\u00ed man\u017eel a p\u00e1r dobrovoln\u00edk\u016f, kte\u0159\u00ed ve sv\u00e9m volnu pom\u00e1haj\u00ed spolku a nemocn\u00fdm d\u011btem.<\/p>\n

Zeptaly jsme se Hany Kadlecov\u00e9, zakladatelky spolku, pro\u010d se ve sv\u00e9m projektu zam\u011b\u0159ila pr\u00e1v\u011b na d\u011bti s touto nemoc\u00ed.<\/p>\n

„D\u011btstv\u00ed je nejhor\u0161\u00ed obdob\u00ed icht\u00fdlka, co se t\u00fd\u010de nemoci samotn\u00e9, tak i psychick\u00fdch obt\u00ed\u017e\u00ed. Nemoc ichty\u00f3za je zat\u00edm nevyl\u00e9\u010diteln\u00e1, by\u0165 v dosp\u011blosti m\u00edrn\u011b ustupuje a je zvladateln\u011bj\u0161\u00ed,“ shrnula Kadlecov\u00e1.<\/p>\n

Na srazu, kter\u00fd se konal od 14. do 16. \u0159\u00edjna, byl pro d\u011bti p\u0159ipraven bohat\u00fd program slo\u017een\u00fd z her, poh\u00e1dek i n\u00e1v\u0161t\u011bvy Mimo\u0148\u016f.<\/p>\n

Ani dosp\u011bl\u00ed v\u0161ak nep\u0159i\u0161li zkr\u00e1tka, p\u0159ichyst\u00e1ny byly p\u0159edn\u00e1\u0161ky od dermatologick\u00fdch firem, l\u00e9ka\u0159ek z Fakultn\u00ed nemocnice Brno, obor genetika a n\u00e1v\u0161t\u011bvu neodm\u00edtl ani l\u00e9ka\u0159 z l\u00e1zn\u00ed Velk\u00e9 Losiny, kde se mimo jin\u00e9 l\u00e9\u010d\u00ed ko\u017en\u00ed onemocn\u011bn\u00ed.<\/p>\n

Jednou z dal\u0161\u00edch aktivit pro d\u011bti byla uk\u00e1zka prvn\u00ed pomoci Zdravotnick\u00e9 z\u00e1chrann\u00e9 slu\u017eby St\u0159edo\u010desk\u00e9ho kraje. Prvn\u00ed pomoc byla n\u00e1zorn\u011b p\u0159edv\u00e1d\u011bna na medv\u011bdovi R\u00ed\u0161ovi.<\/p>\n

D\u011bti se nau\u010dily volat na bezplatnou linku 155, o\u0161et\u0159it pop\u00e1leniny a zlomeniny, zastavit krv\u00e1cen\u00ed a zejm\u00e9na neodkladnou resuscitaci.<\/p>\n

Pot\u00e9 si mohly prohl\u00e9dnout sanitn\u00ed v\u016fz, jeho vybaven\u00ed, dostaly drobn\u00e9 d\u00e1re\u010dky v podob\u011b bal\u00f3nk\u016f a kn\u00ed\u017eek o prvn\u00ed pomoci s medv\u011bdem.<\/p>\n

Spolek Ichty\u00f3za, pota\u017emo sraz „icht\u00fdlk\u016f“, m\u00e1 n\u011bkolik sponzor\u016f a mnoho dal\u0161\u00edch dobrovoln\u00edk\u016f, kte\u0159\u00ed nakoupili pot\u0159ebn\u00e9 v\u011bci pro uskute\u010dn\u011bn\u00ed tohoto srazu.<\/p>\n

Organiz\u00e1to\u0159i akce by jim touto cestou cht\u011bli vyj\u00e1d\u0159it velk\u00e9 pod\u011bkov\u00e1n\u00ed za poskytnut\u00e9 finan\u010dn\u00ed i materi\u00e1ln\u00ed p\u0159\u00edsp\u011bvky.<\/p>\n

—<\/p>\n

Ichty\u00f3za<\/p>\n

je genetick\u00e9 onemocn\u011bn\u00ed k\u016f\u017ee \u010dlov\u011bka, kter\u00e9 m\u00e1 mnoho mutac\u00ed. Kv\u016fli t\u00e9to nemoci maj\u00ed icht\u00fdlkov\u00e9 zhor\u0161enou propustnost k\u016f\u017ee, t\u00edm nast\u00e1vaj\u00ed komplikace s termoregulac\u00ed t\u011bla a maj\u00ed sn\u00ed\u017eenou imunitu organismu.<\/p>\n

P\u0159\u00edbramsk\u00fd den\u00edk
\nhttp:\/\/www.pribramsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

V malebn\u00e9m prost\u0159ed\u00ed Li\u0161kova Ml\u00fdna v Mile\u0161ov\u011b se konal druh\u00fd sraz „Icht\u00fdlk\u016f“. Osloven\u00ed icht\u00fdlek nen\u00ed nad\u00e1vka, jak by se mohlo zd\u00e1t, ale ozna\u010den\u00ed pro d\u011bti, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14944,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-26602","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26602","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=26602"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26602\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14944"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26602"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26602"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26602"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}