Kdy\u017e si novope\u010den\u00e1 maminka Ester v\u0161imla u sv\u00e9 m\u011bs\u00ed\u010dn\u00ed hol\u010di\u010dky zvl\u00e1\u0161tn\u00edho kmit\u00e1n\u00ed o\u010d\u00ed, nep\u0159ikl\u00e1dala tomu \u017e\u00e1dnou v\u00e1hu. Nikolka byla jej\u00ed prvn\u00ed d\u00edt\u011b, a tak p\u0159edpokl\u00e1dala, \u017ee se t\u00edmto zp\u016fsobem rozkouk\u00e1v\u00e1 a nic zvl\u00e1\u0161tn\u00edho na tom nen\u00ed. Teprve o n\u011bkolik m\u011bs\u00edc\u016f pozd\u011bji zjistila, \u017ee \u0161lo o prvn\u00ed projev albinismu \u2013 vz\u00e1cn\u00e9ho genetick\u00e9ho onemocn\u011bn\u00ed.<\/p>\n\n\n\n
\u201eKmit\u00e1n\u00ed o\u010d\u00ed zaujalo i d\u011btskou l\u00e9ka\u0159ku, kdy\u017e Nikolku vy\u0161et\u0159ovala na b\u011b\u017en\u00e9 preventivn\u00ed prohl\u00eddce. Dcerka byla nav\u00edc velmi pla\u010dtiv\u00e9 miminko, tak\u017ee n\u00e1s hned rad\u011bji poslala do nemocnice na dal\u0161\u00ed vy\u0161et\u0159en\u00ed,\u201c popisuje Ester. L\u00e9ka\u0159i na ambulanci v D\u011btsk\u00e9 nemocnici pak provedli komplexn\u00ed prohl\u00eddku, jej\u00ed\u017e sou\u010d\u00e1st\u00ed byly tak\u00e9 krevn\u00ed testy, ani ta ale neodhalila p\u0159\u00ed\u010dinu obt\u00ed\u017e\u00ed. L\u00e9ka\u0159i proto doporu\u010dili je\u0161t\u011b n\u00e1v\u0161t\u011bvu neurologie, kde Nikolka pro\u0161la ultrazvukov\u00fdm vy\u0161et\u0159en\u00edm hlavy.<\/p>\n\n\n\n
\u201eOb\u00edh\u00e1n\u00ed l\u00e9ka\u0159\u016f bylo docela zdlouhav\u00e9, nemocnice si n\u00e1s r\u016fzn\u011b p\u0159ehazovaly kv\u016fli sp\u00e1dovosti. Ani na neurologii nezjistili \u017e\u00e1dn\u00fd probl\u00e9m. Poslali n\u00e1s proto je\u0161t\u011b na o\u010dn\u00ed. Mezit\u00edm uplynuly p\u0159ibli\u017en\u011b dva m\u011bs\u00edce,\u201c vypo\u010d\u00edt\u00e1v\u00e1 Ester. Diagn\u00f3za albinismus poprv\u00e9 zazn\u011bla na o\u010dn\u00edm vy\u0161et\u0159en\u00ed. Definitivn\u011b ji pak potvrdilo genetick\u00e9 vy\u0161et\u0159en\u00ed p\u0159ibli\u017en\u011b o p\u011bt m\u011bs\u00edc\u016f pozd\u011bji. Pr\u00e1v\u011b mimovoln\u00ed kmit\u00e1n\u00ed o\u010d\u00ed neboli tzv. nystagmus b\u00fdv\u00e1 \u010dasto prvn\u00edm projevem albinismu.<\/p>\n\n\n\n
\u201eNa za\u010d\u00e1tku to pro n\u00e1s byl \u0161ok, v\u016fbec jsme netu\u0161ili, \u017ee by o\u010dn\u00ed pohyby mohly souviset s albinismem. Tu diagn\u00f3zu zn\u00e1m, proto\u017ee jsem studovala zdravotn\u00ed \u0161kolu, ale nev\u011bd\u011bla jsem, \u017ee takto \u00fazce souvis\u00ed pr\u00e1v\u011b se zrakem,\u201c popisuje Ester, jak se vyrovn\u00e1vali se zji\u0161t\u011bn\u00edm vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed. L\u00e9ka\u0159i jim hned v \u00favodu vysv\u011btlili, \u017ee Nikolka m\u00e1 v\u00fdrazn\u011b sn\u00ed\u017eenou zrakovou ostrost a v budoucnu nebude dob\u0159e vid\u011bt. Na kolik procent, se uk\u00e1\u017ee teprve \u010dasem. \u201eTe\u010f jsou Nikolce 2 roky a s br\u00fdlemi m\u00e1 asi 40 % zraku. P\u0159esn\u011bj\u0161\u00ed v\u00fdsledky se dozv\u00edme, a\u017e bude star\u0161\u00ed,\u201c dopl\u0148uje Ester.<\/p>\n\n\n\n
P\u0159i hled\u00e1n\u00ed bli\u017e\u0161\u00edch informac\u00ed narazila na pacientskou organizaci Alb\u00edna, kter\u00e1 j\u00ed pomohla se v problematice albinismu l\u00e9pe zorientovat a propojila ji s rodi\u010di stejn\u011b nemocn\u00fdch d\u011bt\u00ed. \u201eJe skv\u011bl\u00e9, \u017ee se mohu poradit s n\u011bk\u00fdm, kdo je v podobn\u00e9 situaci. Setk\u00e1v\u00e1me se s rodi\u010di, jezd\u00edme i na z\u00e1\u017eitkov\u00e9 vzd\u011bl\u00e1vac\u00ed pobyty s d\u011btmi. Tak\u00e9 m\u00e1me spole\u010dn\u00fd chat, kde sd\u00edl\u00edme konkr\u00e9tn\u00ed tipy, t\u0159eba na opalovac\u00ed kr\u00e9my nebo dobr\u00e9 optiky, kde zvl\u00e1dnou d\u011btsk\u00e9 br\u00fdlky,\u201c pochvaluje si Ester, kter\u00e1 z\u00e1rove\u0148 vyu\u017e\u00edv\u00e1 slu\u017eby ran\u00e9 p\u00e9\u010de E DA , je\u017e se orientuje na d\u011bti se zdravotn\u00edm posti\u017een\u00edm. Poradkyn\u011b, kter\u00e1 je z\u00e1rove\u0148 zrakovou terapeutkou, j\u00ed pom\u00e1h\u00e1 vyb\u00edrat pro Nikolku hra\u010dky a obr\u00e1zky, kter\u00e9 jej\u00ed zrak vhodn\u011b stimuluj\u00ed. <\/p>\n\n\n\n
\u201eKv\u016fli albinismu se vyh\u00fdb\u00e1me ostr\u00e9mu slun\u00ed\u010dku, Nikolku pravideln\u011b ma\u017eeme opalovac\u00edm kr\u00e9mem. Mus\u00edme na ni d\u00e1vat pozor, proto\u017ee ob\u010das n\u011bco p\u0159ehl\u00e9dne a do n\u011b\u010deho naraz\u00ed, zejm\u00e9na pokud jde o p\u0159ek\u00e1\u017eku, kterou m\u00e1 v \u00farovni o\u010d\u00ed. Probl\u00e9my j\u00ed d\u011blaj\u00ed tak\u00e9 nerovnosti v ter\u00e9nu a schody, kter\u00e9 nevid\u00ed. Je pro n\u00e1s ale d\u016fle\u017eit\u00e9, \u017ee i kdy\u017e m\u00e1 v\u00fdraznou vadu zraku, vyv\u00edj\u00ed se jako ostatn\u00ed d\u011bti a m\u016f\u017ee s nemoc\u00ed plnohodnotn\u011b \u017e\u00edt. Moc n\u00e1m pom\u00e1h\u00e1 komunita pacientsk\u00e9 organizace a podpora na\u0161ich nejbli\u017e\u0161\u00edch,\u201c dod\u00e1v\u00e1 Ester.<\/p>\n","protected":false},"excerpt":{"rendered":"
Kdy\u017e si novope\u010den\u00e1 maminka Ester v\u0161imla u sv\u00e9 m\u011bs\u00ed\u010dn\u00ed hol\u010di\u010dky zvl\u00e1\u0161tn\u00edho kmit\u00e1n\u00ed o\u010d\u00ed, nep\u0159ikl\u00e1dala tomu \u017e\u00e1dnou v\u00e1hu. Nikolka byla jej\u00ed prvn\u00ed d\u00edt\u011b, a tak p\u0159edpokl\u00e1dala, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":64098,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-64072","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64072","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=64072"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64072\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/64098"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64072"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64072"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64072"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}