Veronika (31) z Brna m\u00e1 od mali\u010dka velk\u00e9 probl\u00e9my s vid\u011bn\u00edm. Netu\u0161ila ale, \u017ee za nimi stoj\u00ed albinismus. Od d\u011btstv\u00ed m\u00e1 v\u0161echny typick\u00e9 projevy tohoto genetick\u00e9ho onemocn\u011bn\u00ed \u2013 nystagmus (mimovoln\u00e9 pohyby o\u010d\u00ed), sv\u011btloplachost a astigmatismus, tedy vadu zp\u016fsobuj\u00edc\u00ed rozmazan\u00e9 vid\u011bn\u00ed.<\/p>\n\n\n\n
O albinismu sly\u0161ela podrobn\u011bji a\u017e p\u0159i studiu speci\u00e1ln\u00ed pedagogiky, kde se studenti seznamovali s r\u016fzn\u00fdmi zrakov\u00fdmi vadami a jejich projevy. Kdy\u017e p\u0159i\u0161la \u0159e\u010d pr\u00e1v\u011b na albinismus, p\u0159ekvapilo ji, jak p\u0159esn\u011b popisovan\u00e9 obt\u00ed\u017ee odpov\u00eddaj\u00ed jej\u00edm vlastn\u00edm zku\u0161enostem. <\/p>\n\n\n\n
\u201eZm\u00ednili v\u0161echny o\u010dn\u00ed vady, kter\u00e9 m\u00e1m i j\u00e1. \u0158\u00edkala jsem si, \u017ee je to n\u011bjak\u00e1 zvl\u00e1\u0161tn\u00ed n\u00e1hoda,\u201c vzpom\u00edn\u00e1 Veronika. Do t\u00e9 doby si toti\u017e, stejn\u011b jako mnoho dal\u0161\u00edch lid\u00ed, spojovala albinismus p\u0159edev\u0161\u00edm s velmi sv\u011btlou poko\u017ekou a vlasy. \u201eVid\u011bla jsem dokumenty o alb\u00ednech v Africe, ale myslela jsem si, \u017ee se to t\u00fdk\u00e1 jen \u00fapln\u011b sv\u011btl\u00fdch lid\u00ed. V\u016fbec m\u011b nenapadlo, \u017ee bych mohla m\u00edt stejnou diagn\u00f3zu i j\u00e1,\u201c dod\u00e1v\u00e1.<\/p>\n\n\n\n
Kdy\u017e se o sv\u00e9m podez\u0159en\u00ed zm\u00ednila doma, maminka j\u00ed p\u0159ipomn\u011bla, \u017ee podobn\u00e9 zrakov\u00e9 obt\u00ed\u017ee a o\u010dn\u00ed vady byly popisov\u00e1ny u\u017e v l\u00e9ka\u0159sk\u00fdch zpr\u00e1v\u00e1ch z d\u011btstv\u00ed. \u201eNa genetice jsem byla teprve p\u0159ed n\u011bkolika m\u011bs\u00edci a na v\u00fdsledky st\u00e1le \u010dek\u00e1m. L\u00e9ka\u0159ka mi ale na z\u00e1klad\u011b dosavadn\u00edch vy\u0161et\u0159en\u00ed \u0159ekla, \u017ee se s nejv\u011bt\u0161\u00ed pravd\u011bpodobnost\u00ed jedn\u00e1 o albinismus. Definitivn\u00ed potvrzen\u00ed diagn\u00f3zy zat\u00edm nem\u00e1m,\u201c vysv\u011btluje Veronika.<\/p>\n\n\n\n
Prvn\u00ed zn\u00e1mky zrakov\u00e9ho posti\u017een\u00ed se p\u0159itom objevily u\u017e v kojeneck\u00e9m v\u011bku. Jedna z l\u00e9ka\u0159ek si v\u0161imla, \u017ee Veronika nereaguje na podn\u011bty tak, jak b\u00fdv\u00e1 u miminek b\u011b\u017en\u00e9. \u201eMamince tehdy \u0159ekli, \u017ee jsem pravd\u011bpodobn\u011b nevidom\u00e1, proto\u017ee nereaguji na pohyby a okol\u00ed,\u201c vypr\u00e1v\u00ed Veronika. Postupn\u011b se v\u0161ak uk\u00e1zalo, \u017ee jej\u00ed zrak sice nen\u00ed pln\u011b vyvinut\u00fd, ale umo\u017e\u0148uje j\u00ed v\u00e9st samostatn\u00fd \u017eivot. Sama \u0159\u00edk\u00e1, \u017ee se b\u011bhem let nau\u010dila p\u0159izp\u016fsobit ka\u017edodenn\u00ed fungov\u00e1n\u00ed sv\u00fdm mo\u017enostem. <\/p>\n\n\n\n
\u201e\u010clov\u011bk vlastn\u011b nem\u00e1 srovn\u00e1n\u00ed, proto\u017ee takhle vid\u00ed cel\u00fd \u017eivot. N\u011bkter\u00e9 v\u011bci d\u011bl\u00e1m automaticky a ani nad nimi nep\u0159em\u00fd\u0161l\u00edm,\u201c vysv\u011btluje. Ve \u0161kole j\u00ed pom\u00e1halo sed\u011bt v prvn\u00ed lavici, dnes si podle pot\u0159eby zv\u011bt\u0161uje text na mobilu nebo po\u010d\u00edta\u010di. Pot\u00ed\u017ee j\u00ed d\u011bl\u00e1 nap\u0159\u00edklad rozpozn\u00e1v\u00e1n\u00ed lid\u00ed na v\u011bt\u0161\u00ed vzd\u00e1lenost nebo \u010dten\u00ed \u010d\u00edsel autobus\u016f. Nejv\u011bt\u0161\u00ed omezen\u00ed ale vn\u00edm\u00e1 v tom, \u017ee nem\u016f\u017ee \u0159\u00eddit. \u201eTo je asi v\u011bc, kter\u00e1 m\u011b omezuje nejv\u00edc,\u201c \u0159\u00edk\u00e1.<\/p>\n\n\n\n
Podle Veroniky panuje kolem albinismu \u0159ada m\u00fdt\u016f. Mnoho lid\u00ed si st\u00e1le mysl\u00ed, \u017ee v\u0161ichni pacienti maj\u00ed zcela b\u00edlou poko\u017eku, vlasy a \u010derven\u00e9 o\u010di. \u201eM\u00e1lokdo v\u00ed, \u017ee s albinismem souvis\u00ed tak\u00e9 zrakov\u00e9 vady, kter\u00e9 b\u00fdvaj\u00ed \u010dasto t\u00edm nejv\u011bt\u0161\u00edm probl\u00e9mem,\u201c upozor\u0148uje Veronika. Albinismus je genetick\u00e9 onemocn\u011bn\u00ed spojen\u00e9 s nedostatkem pigmentu v t\u011ble. Krom\u011b zrakov\u00fdch obt\u00ed\u017e\u00ed proto b\u00fdv\u00e1 jedn\u00edm z jeho projev\u016f tak\u00e9 sv\u011btlej\u0161\u00ed poko\u017eka, kter\u00e1 je citliv\u011bj\u0161\u00ed na slune\u010dn\u00ed z\u00e1\u0159en\u00ed. Lid\u00e9 s albinismem se \u010dast\u011bji sp\u00e1l\u00ed a maj\u00ed vy\u0161\u0161\u00ed riziko vzniku z\u00e1va\u017en\u011bj\u0161\u00edch ko\u017en\u00edch onemocn\u011bn\u00ed. Mus\u00ed proto v\u011bnovat zv\u00fd\u0161enou pozornost ochran\u011b p\u0159ed sluncem a pravideln\u011b pou\u017e\u00edvat opalovac\u00ed kr\u00e9my s vysok\u00fdm ochrann\u00fdm faktorem.<\/p>\n\n\n\n
\u201eJ\u00e1 jsem sv\u011btl\u00e1, ale spousta lid\u00ed by \u0159ekla, \u017ee jsem prost\u011b jen blond\u00fdnka. Albinismus je spektrum a existuje mnoho r\u016fzn\u00fdch variant. N\u011bkte\u0159\u00ed lid\u00e9 jsou v\u00fdrazn\u011b sv\u011btlej\u0161\u00ed ne\u017e j\u00e1, jin\u00ed naopak tmav\u0161\u00ed,\u201c vysv\u011btluje Veronika. \u201eK\u016f\u017ei m\u00e1m na alb\u00ednku docela tmavou, ale i tak si d\u00e1v\u00e1m v\u011bt\u0161\u00ed pozor na slunce. Mnohem v\u00edc se ma\u017eu opalovac\u00edm kr\u00e9mem a chr\u00e1n\u00edm se p\u0159ed slune\u010dn\u00edm z\u00e1\u0159en\u00edm,\u201c dod\u00e1v\u00e1.<\/p>\n\n\n\n
S v\u00fdrazn\u011bj\u0161\u00edmi p\u0159edsudky se b\u011bhem \u017eivota nesetk\u00e1vala. \u201eV d\u011btstv\u00ed jsem nosila tmav\u00e9 br\u00fdle kv\u016fli citlivosti na sv\u011btlo a to ob\u010das p\u0159itahovalo pozornost spolu\u017e\u00e1k\u016f. Jinak jsem se ale s \u017e\u00e1dn\u00fdmi negativn\u00edmi reakcemi nesetk\u00e1vala,\u201c vzpom\u00edn\u00e1 Veronika. Jej\u00ed zrakov\u00e1 ostrost dosahuje p\u0159ibli\u017en\u011b 40 % na jednom oku a 20 % na druh\u00e9m. <\/p>\n\n\n\n
\u201eBr\u00fdle mi pom\u00e1haj\u00ed, ale nevy\u0159e\u0161\u00ed v\u0161echny zrakov\u00e9 vady, kter\u00e9 s albinismem souvisej\u00ed,\u201c \u0159\u00edk\u00e1 Veronika. K pacientsk\u00e9 organizaci Alb\u00edna se dostala pom\u011brn\u011b n\u00e1hodou. Pot\u00e9 co j\u00ed zem\u0159el dlouholet\u00fd o\u010dn\u00ed l\u00e9ka\u0159, hledala specialistu, kter\u00fd by m\u011bl zku\u0161enosti pr\u00e1v\u011b s pacienty s albinismem. \u201eP\u0159es internet a soci\u00e1ln\u00ed s\u00edt\u011b jsem narazila na komunitu lid\u00ed se stejnou diagn\u00f3zou a n\u00e1sledn\u011b i na samotnou organizaci. P\u016fvodn\u011b jsem hledala hlavn\u011b doporu\u010den\u00ed na o\u010dn\u00edho l\u00e9ka\u0159e. Nem\u011bla jsem pocit, \u017ee by mi zapojen\u00ed se do organizace n\u011bjak z\u00e1sadn\u011b pomohlo,\u201c p\u0159izn\u00e1v\u00e1 Veronika. Pacientsk\u00e1 organizace Alb\u00edna dnes propojuje rodiny s odborn\u00edky, sd\u00edl\u00ed zku\u0161enosti pacient\u016f a poskytuje podporu rodi\u010d\u016fm d\u011bt\u00ed s nov\u011b diagnostikovan\u00fdm albinismem.<\/p>\n\n\n\n
\u201eMaminky men\u0161\u00edch d\u011bt\u00ed \u010dasto \u0159e\u0161\u00ed oble\u010den\u00ed s UV ochranou, speci\u00e1ln\u00ed prac\u00ed prost\u0159edky nebo kvalitn\u00ed opalovac\u00ed kr\u00e9my. To v\u0161echno stoj\u00ed hodn\u011b pen\u011bz,\u201c \u0159\u00edk\u00e1 Veronika. Organizace se proto v\u011bnuje tak\u00e9 osv\u011bt\u011b a upozor\u0148uje na vysok\u00e9 n\u00e1klady spojen\u00e9 s ochranou poko\u017eky p\u0159ed sluncem. \u201eNov\u011b se sna\u017e\u00edme prosadit i to, aby lidem s albinismem p\u0159isp\u00edval st\u00e1t nebo zdravotn\u00ed poji\u0161\u0165ovny na opalovac\u00ed kr\u00e9my. Pro mnoho rodin jde o dlouhodob\u011b velkou finan\u010dn\u00ed z\u00e1t\u011b\u017e,\u201c dod\u00e1v\u00e1. <\/p>\n\n\n\n
Postupn\u011b Veronika zjistila, \u017ee jej\u00ed zku\u0161enosti mohou b\u00fdt cenn\u00e9 p\u0159edev\u0161\u00edm pro rodi\u010de d\u011bt\u00ed, kter\u00fdm byl albinismus nov\u011b diagnostikov\u00e1n. Pr\u00e1v\u011b jejich podpo\u0159e se dnes v\u011bnuje nejv\u00edce. Mnoz\u00ed rodi\u010de maj\u00ed po stanoven\u00ed diagn\u00f3zy obavy z budoucnosti sv\u00e9ho d\u00edt\u011bte a hledaj\u00ed odpov\u011bdi na \u0159adu ot\u00e1zek. \u201eTy d\u011bti mohou dok\u00e1zat v\u0161echno, co budou cht\u00edt. Kdy\u017e maj\u00ed spr\u00e1vnou podporu a p\u0159\u00edstup, zvl\u00e1dnou spoustu v\u011bc\u00ed stejn\u011b jako jejich vrstevn\u00edci,\u201c \u0159\u00edk\u00e1 Veronika. \u201eNa spoust\u011b z n\u00e1s vlastn\u011b albinismus nen\u00ed na prvn\u00ed pohled moc poznat. Prost\u011b jsme se s t\u00edm nau\u010dili \u017e\u00edt,\u201c dod\u00e1v\u00e1. \u201eOb\u010das jsou n\u011bkter\u00e9 situace n\u00e1ro\u010dn\u011bj\u0161\u00ed a \u010dlov\u011bk si je mus\u00ed p\u0159izp\u016fsobit nebo si n\u011bco vybojovat. Ale nikdy jsem nem\u011bla pocit, \u017ee by m\u011b albinismus z\u00e1sadn\u011b omezoval,\u201c uzav\u00edr\u00e1<\/p>\n","protected":false},"excerpt":{"rendered":"
Veronika (31) z Brna m\u00e1 od mali\u010dka velk\u00e9 probl\u00e9my s vid\u011bn\u00edm. Netu\u0161ila ale, \u017ee za nimi stoj\u00ed albinismus. Od d\u011btstv\u00ed m\u00e1 v\u0161echny typick\u00e9 projevy tohoto […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":64090,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-64078","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\/64078","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=64078"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64078\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/64090"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64078"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64078"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64078"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}