O svou k\u016f\u017ei pe\u010duje Maru\u0161ka i 12 hodin denn\u011b. Trp\u00ed p\u0159i otev\u00edr\u00e1n\u00ed dve\u0159\u00ed, \u010di\u0161t\u011bn\u00ed zub\u016f, sezen\u00ed, nebo i oby\u010dejn\u00e9 ch\u016fzi. Kdy\u017e je nejh\u016f\u0159, propichuje s pl\u00e1\u010dem z\u00e1n\u011btliv\u00e1 m\u00edsta steriln\u00ed jehlou a \u010dek\u00e1, a\u017e vyte\u010de v\u0161echen hnis. Jej\u00ed diagn\u00f3za zn\u00ed: epoidermolityck\u00e1 ichtyoza bull\u00f3sn\u00edho typu spojen\u00e1 s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. Zp\u016fsobuje j\u00ed ka\u017edodenn\u00ed bolesti, ale i tak se mlad\u00e1 \u017eena sna\u017e\u00ed \u017e\u00edt naplno.<\/p>\n\n\n\n
Kdy\u017e se Maru\u0161ka narodila, m\u011bla pravou stranu t\u011bla posetou hrub\u00fdmi strupy. L\u00e9ka\u0159i si v\u0161ak tenkr\u00e1t mysleli, \u017ee se p\u0159i porodu od\u0159ela o mamin\u010dinu p\u00e1nev. \u201eKdy\u017e se ale po \u0161estined\u011bl\u00ed rozlezly strupy po cel\u00e9m t\u011ble, v\u0161em bylo jasn\u00e9, \u017ee to nen\u00ed n\u00e1sledek poran\u011bn\u00ed p\u0159i porodu,\u201c za\u010d\u00edn\u00e1 vypr\u00e1v\u011bt Maru\u0161ka, kter\u00e1 se o ichtyoze rozepisuje i na sv\u00e9m instagramov\u00e9m profilu @maruskazpchv.<\/p>\n\n\n\n
Jej\u00ed typ ichtyozy je velice specifick\u00fd pro velk\u00e9 n\u00e1nosy ztvrdl\u00e9 k\u016f\u017ee, kter\u00e1 se mus\u00ed brousit, ale z\u00e1rove\u0148 je k\u016f\u017ee velmi k\u0159ehk\u00e1 a sta\u010d\u00ed drobn\u011b zavadit a k\u016f\u017ee, jak sama \u0159\u00edk\u00e1, let\u00ed dol\u016f. Denn\u011b bojuje s puch\u00fd\u0159i, kter\u00e9 kdy\u017e neo\u0161et\u0159\u00ed dostate\u010dn\u011b, nastane z\u00e1n\u011bt, kter\u00fd se \u0161\u00ed\u0159\u00ed po t\u011ble jak lavina.<\/p>\n\n\n\n
Na \u00favod se poj\u010fme pod\u00edvat na p\u0159\u00edb\u011bh b\u011b\u017en\u00e9ho dne, kter\u00fd Maru\u0161ka pro\u017e\u00edv\u00e1 dnes a denn\u011b. P\u0159ed odchodem na proch\u00e1zku maminka dvou chlapc\u016f zji\u0161\u0165uje, \u017ee se j\u00ed rozj\u00ed\u017ed\u00ed z\u00e1n\u011bt na chodidle. \u201eZ minuty na minutu je to hor\u0161\u00ed, bolest pulsuje a m\u011b se u\u017e neda\u0159\u00ed na to nemyslet, za\u010d\u00edn\u00e1m jednat. Propichuji nejsiln\u011bj\u0161\u00ed steriln\u00ed jehlou, ale nic nete\u010de. Z\u00e1n\u011bt je ve f\u00e1zi zr\u00e1n\u00ed a potrv\u00e1 n\u011bkolik hodin, ne\u017e propukne, do t\u00e9 doby bude jen bolet,\u201c pro\u017e\u00edv\u00e1 bolest Maru\u0161ka, ale i tak bere d\u011bti do parku s prsty zatnut\u00fdmi do chodidla.<\/p>\n\n\n\n
\u201eBol\u00ed u\u017e cel\u00e1 noha a z\u00e1n\u011bt se dost\u00e1v\u00e1 na dal\u0161\u00ed m\u00edsto. Dobelh\u00e1me se k autu, doraz\u00edme dom\u016f a u\u017e s brekem sund\u00e1v\u00e1m botu, hled\u00e1m \u010dist\u00e9 steriln\u00ed jehly a p\u0159es obrovskou bolest propichuji tvrdou k\u016f\u017ei a trh\u00e1m ji pry\u010d, abych se dostala k m\u00edstu, kter\u00e9mu mus\u00edm ulevit. Nast\u00e1v\u00e1 \u010d\u00e1ste\u010dn\u00e1 \u00faleva, ale z\u00e1rove\u0148 boj o to, aby se infekce neroz\u0161\u00ed\u0159ila d\u00e1l. Do hodiny c\u00edt\u00edm, \u017ee se n\u011bco bude d\u00edt v koleni a na h\u00fd\u017ed\u00edch. A v t\u011bchto dnech bych ka\u017ed\u00e9mu, kdo mi \u0159ekne, \u017ee jsem p\u0159ece na bolest zvykl\u00e1, dala v\u00edte co. Na tu bolest se zvyknout ned\u00e1,\u201c p\u0159ibli\u017euje sv\u016fj stav Maru\u0161ka na sv\u00e9m instagramov\u00e9m profilu.<\/p>\n\n\n\n
\u201eV m\u00e9m p\u0159\u00edpad\u011b se jedn\u00e1 o vrozenou genetickou vadu k\u016f\u017ee, kde doch\u00e1z\u00ed ke \u0161patn\u00e9mu rohov\u011bn\u00ed k\u016f\u017ee, a nav\u00edc m\u00e1m bull\u00f3sn\u00ed typ, kter\u00fd bohu\u017eel souvis\u00ed s \u010dast\u00fdmi z\u00e1n\u011bty, puch\u00fd\u0159i, ale z\u00e1rove\u0148 je k\u016f\u017ee velice k\u0159ehk\u00e1,\u201c vysv\u011btluje Maru\u0161ka. Ve sv\u00e9 genetick\u00e9 v\u00fdbav\u011b si s sebou nese po\u0161kozen\u00fd gen KRT1, kter\u00fd vznik\u00e1 \u00faplnou n\u00e1hodou. Je to ov\u0161em dominantn\u00ed gen, co\u017e znamen\u00e1, \u017ee riziko p\u0159enosu na potomky je 1:1. Maru\u0161ka m\u00e1 dv\u011b d\u011bti a mluv\u00ed o ohromn\u00e9m \u0161t\u011bst\u00ed, \u017ee ani jedno z nich nemoc\u00ed netrp\u00ed. Z\u00e1rove\u0148 je v\u0161ak Maru\u0161ka skryt\u00fdm p\u0159ena\u0161e\u010dem dal\u0161\u00edch dvou gen\u016f, kter\u00e9 zp\u016fsobuj\u00ed dal\u0161\u00ed typy ichtyoz, stejn\u011b jako jej\u00ed synov\u00e9.<\/p>\n\n\n\n
Dnes m\u00e1 Maru\u0161ka k\u016f\u017ei posti\u017eenou t\u00e9m\u011b\u0159 na 80 procentech t\u011bla, ov\u0161em jej\u00ed kr\u00e1sn\u00fd obli\u010dej z\u016fst\u00e1v\u00e1 bez zn\u00e1mek posti\u017een\u00ed. \u201eLidi v\u017edycky p\u0159ekvap\u00ed, \u017ee nem\u00e1m k\u016f\u017ei posti\u017eenou i na obli\u010deji. Prvn\u00ed dojem jist\u011b d\u011bl\u00e1 sv\u00e9, ale v\u00edte, jak i ta k\u016f\u017ee na obli\u010deji bol\u00ed? A\u010d se zd\u00e1, \u017ee m\u00e1m na obli\u010deji zdrav\u00e1 m\u00edsta, nen\u00ed tomu tak. B\u011bhem chv\u00edle m\u011b dok\u00e1\u017ee i obli\u010dej p\u011bkn\u011b pozlobit. Kupodivu mi ale pom\u00e1h\u00e1 l\u00ed\u010den\u00ed, kter\u00e9 funguje jako v\u00fdborn\u00e1 bari\u00e9ra p\u0159ed vn\u011bj\u0161\u00edmi vlivy,\u201c hovo\u0159\u00ed Maru\u0161ka o nemoci, kter\u00e9 se nelze zbavit l\u00e9ky, zm\u011bnou j\u00eddeln\u00ed\u010dku ani kosmetick\u00fdmi prost\u0159edky.<\/p>\n\n\n\n
Bez ka\u017edodenn\u00ed p\u00e9\u010de se neobejde<\/p>\n\n\n\n
Jej\u00ed nemoc se ned\u00e1 vyl\u00e9\u010dit, jeliko\u017e se jedn\u00e1 o genetick\u00e9 onemocn\u011bn\u00ed a pod nemocnou k\u016f\u017e\u00ed Maru\u0161ka nem\u00e1 k\u016f\u017ei zdravou. O svou k\u016f\u017ei mus\u00ed mlad\u00e1 \u017eena denn\u011b pe\u010dovat. \u201eP\u0159i ichtyoze je ka\u017edodenn\u00ed p\u00e9\u010de velmi d\u016fle\u017eit\u00e1. Na h\u00fd\u017ed\u00edch a kolenou je k\u016f\u017ee jin\u00e1, velmi hrub\u00e1, \u010dasto bol\u00ed a je pot\u0159eba ji zvl\u00e1\u010d\u0148ovat v\u00edce. Na noh\u00e1ch a chodidlech je stav extr\u00e9mn\u00ed, k\u016f\u017ee se \u010dasto zapa\u0159uje a vznikaj\u00ed bolestiv\u00e9 z\u00e1n\u011bty. Proto na tato m\u00edsta pot\u0159ebuji zase o n\u011bco leh\u010d\u00ed kr\u00e9my. Jinou p\u00e9\u010di zase vy\u017eaduje obli\u010dej, vnit\u0159ek u\u0161\u00ed a jejich okol\u00ed,\u201c popisuje Maru\u0161ka.<\/p>\n\n\n\n
Kdy\u017e ale nastane probl\u00e9m v podob\u011b hnisaj\u00edc\u00edch ran a puch\u00fd\u0159\u016f, pot\u0159ebuje aplikovat takzvan\u00e9 tekut\u00e9 n\u00e1plasti, kter\u00e9 obsahuj\u00ed zinek, m\u011b\u010f a Maru\u0161ku nejednou zachr\u00e1nily. \u201eNos\u00edm je v\u0161ude s sebou, proto\u017ee n\u011bkdy i po dvacetiminutov\u00e9 proch\u00e1zce m\u016f\u017ee nastat peklo, kdy sed\u00edm na pa\u0159ezu a vytahuji steriln\u00ed jehly, abych si prop\u00edchla hnisaj\u00edc\u00ed probl\u00e9m,\u201c dopl\u0148uje Maru\u0161ka, pro kterou neexistuje den, kdy by se o svou k\u016f\u017ei nestarala. \u201eKdybych se o k\u016f\u017ei nepostarala, ozve se sama tepaj\u00edc\u00ed bolest\u00ed, kv\u016fli kter\u00e9 \u010dasto vst\u00e1v\u00e1m i v noci,\u201c dod\u00e1v\u00e1.<\/p>\n\n\n\n
K\u016f\u017ei si brous\u00ed bruskou na kov<\/p>\n\n\n\n
Nejlep\u0161\u00ed p\u00e9\u010d\u00ed je ale k\u016f\u017ei manu\u00e1ln\u011b odstra\u0148ovat. Norm\u00e1ln\u00edm lidem se k\u016f\u017ee obnovuje po 28 dnech, lidem s ichtyozou u\u017e po t\u0159ech, a proto je pot\u0159eba k\u016f\u017ei obru\u0161ovat. \u201eK\u016f\u017ei si brous\u00edm bruskou na kov. Je to vlastn\u011b model\u00e1\u0159sk\u00e1 bruska, kter\u00e1 m\u00e1 vysok\u00e9 ot\u00e1\u010dky, tak\u017ee je m\u00fdm velk\u00fdm pomocn\u00edkem. Brous\u00edm si zejm\u00e9na ruce a nohy. K\u016f\u017ee na zbytku t\u011bla je jemn\u011bj\u0161\u00ed, tam by m\u011b brou\u0161en\u00ed velmi bolelo,\u201c vysv\u011btluje Maru\u0161ka.<\/p>\n\n\n\n
Dnes u\u017e je Maru\u0161ka sebev\u011bdom\u011bj\u0161\u00ed a sv\u00e9 onemocn\u011bn\u00ed k\u016f\u017ee p\u0159ijala, ale i tak ji mrz\u00ed pohledy a \u0159e\u010di typu: \u201eVid\u011bla jsi to? Koukni na ty nohy a ruce. Fuj,\u201c kter\u00e9 dle sv\u00fdch slov sly\u0161ela u\u017e milionkr\u00e1t. D\u0159\u00edv jsem z toho byla \u0161patn\u00e1 a v\u0161e, co jsem sly\u0161ela, brala hrozn\u011b osobn\u011b, k\u0159i\u010dela jsem, nad\u00e1vala, h\u00e1dala se s lidmi a sni\u017eovala se na jejich \u00farove\u0148. Jak se tomu stav\u00edm dnes? Bu\u010f na n\u011b z\u00edr\u00e1m stejn\u011b tup\u011b, jako oni na m\u011b, \u010d\u00edm\u017e se nechci \u0159adit na jejich \u00farove\u0148, ale chci v nich pouze vyvolat pocit, kter\u00fd oni vyvol\u00e1vaj\u00ed ve mn\u011b. Obvykle jim je to okam\u017eit\u011b nep\u0159\u00edjemn\u00e9. Nebo se prost\u011b jen usm\u011bju, \u010d\u00edm\u017e jim d\u00e1v\u00e1m najevo, \u017ee m\u011b lidsk\u00e1 hloupost u\u017e nerozhod\u00ed,\u201c \u0159\u00edk\u00e1 Maru\u0161ka, kter\u00e1 si svou nemoc nevybrala.<\/p>\n\n\n\n
I p\u0159es \u0159adu omezen\u00ed \u017eije naplno<\/p>\n\n\n\n
Kv\u016fli sv\u00e9 nemoci nem\u016f\u017ee \u017e\u00edt Maru\u0161ka \u00fapln\u011b b\u011b\u017en\u00fd \u017eivot, ale sna\u017e\u00ed se \u017e\u00edt naplno, i kdy\u017e to n\u011bkdy bol\u00ed.<\/p>\n\n\n\n
\u201eNem\u016f\u017eu b\u011bhat, dlouho sed\u011bt a chodit, sahat na pen\u00edze, jezdit MHD, proto\u017ee v\u0161ude jsou bakterie, ze kter\u00fdch m\u00e1m bolestiv\u00e9 z\u00e1n\u011bty. Nem\u011bla bych chodit ani na ve\u0159ejn\u00e1 koupali\u0161t\u011b, ale kv\u016fli syn\u016fm ob\u010das chod\u00edm, proto\u017ee koup\u00e1n\u00ed miluj\u00ed. J\u00e1 vlastn\u011b v\u0161echno m\u016f\u017eu, ale pak mus\u00edm d\u00e1t k\u016f\u017ei mnohem v\u00edc l\u00e1sky. Po chlorovan\u00e9 vod\u011b si nav\u00edc p\u0159ipad\u00e1m tak, jako kdyby si \u017eena s velikost\u00ed S obl\u00e9kla k\u016f\u017ei sedmilet\u00e9 d\u00edvky. Nav\u00edc po n\u00e1v\u0161t\u011bv\u011b koupali\u0161t\u011b v\u017edy n\u00e1sleduje infekce,\u201c popisuje sv\u016fj stav \u017eena, kter\u00e1 p\u0159esto pravideln\u011b sportuje a udr\u017euje se v kondici.<\/p>\n\n\n\n
I p\u0159esto v\u0161echno se Maru\u0161ka nec\u00edt\u00ed b\u00fdt nemocnou nebo posti\u017eenou osobou. \u201eNarodila jsem se zdrav\u00e1, jsem zdrav\u00e1 a d\u00edky chybce, kter\u00e1 se p\u0159i narozen\u00ed stala, m\u016f\u017eu otev\u00edrat o\u010di i jin\u00fdm lidem a p\u0159edat jim informaci, aby si v\u00e1\u017eili toho, \u017ee se m\u016f\u017eou t\u0159eba jen prob\u011bhnout a v klidu n\u011bkde posed\u011bt,\u201c upozor\u0148uje Maru\u0161ka. Za svou k\u016f\u017ei se nestyd\u00ed, nikdy nem\u011bla jinou a m\u00e1 tu svou r\u00e1da. N\u011bkdy sice nad\u00e1v\u00e1, bre\u010d\u00ed bolest\u00ed a n\u011bkdy svou k\u016f\u017ei nechce, proto\u017ee j\u00ed bolest\u00ed tepe cel\u00e9 t\u011blo. Ale pat\u0159\u00ed to k jej\u00edmu \u017eivotu a nikdy, jak sama \u0159\u00edk\u00e1, nic jin\u00e9ho nepoznala.<\/p>\n\n\n\n
\u201ePoznala jsem ale, jak d\u016fle\u017eit\u00e9 je m\u00edt 100% zdrav\u00ed, jak moc si lid\u00e9 n\u011bkdy sami sebe nev\u00e1\u017e\u00ed a jak kr\u00e1sn\u00e9 je pomoci otev\u00edrat o\u010di jin\u00fdm lidem. D\u0159\u00edve jsem si hodn\u011b brala osobn\u011b pohledy lid\u00ed kolem sebe a hodn\u011b s t\u00edm vnit\u0159n\u011b bojovala, cht\u011bla jsem b\u00fdt dokonal\u00e1, v po\u0159\u00e1dku a stejn\u00e1 jako ostatn\u00ed. Te\u010f v\u00edm, \u017ee to byla hloupost a \u017ee pr\u00e1v\u011b d\u00edky ichtyoze m\u00e1m kolem sebe holky jako Kl\u00e1rku s Vanilkou, kter\u00e1 m\u00e1 PKU (tak\u00e9 genetickou vadu). Nerada bych zapomn\u011bla i t\u0159eba na Hanku Kadlecovou, zakladatelku @spolek_ichtyoza, kter\u00e1 d\u011bl\u00e1 v\u0161e mo\u017en\u00e9, aby n\u00e1m v\u0161em ulevila, abychom se m\u011bli \u010d\u00edm mazat a trochu ulevila i na\u0161im financ\u00edm,\u201c d\u011bkuje na z\u00e1v\u011br Maru\u0161ka.<\/p>\n\n\n\n
Na www.ichtyoza.cz m\u016f\u017eete lidem trp\u00edc\u00edm touto vz\u00e1cnou diagn\u00f3zou pomoci a p\u0159isp\u011bt na r\u016fzn\u00e9 sb\u00edrky, kter\u00e9 se zakl\u00e1daj\u00ed tak\u00e9 nap\u0159\u00edklad pro rodiny s d\u011btmi, kter\u00e9 kr\u00e9my a jin\u00e9 pom\u016fcky velice pot\u0159ebuj\u00ed.<\/p>\n\n\n\n
Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" O svou k\u016f\u017ei pe\u010duje Maru\u0161ka i 12 hodin denn\u011b. Trp\u00ed p\u0159i otev\u00edr\u00e1n\u00ed dve\u0159\u00ed, \u010di\u0161t\u011bn\u00ed zub\u016f, sezen\u00ed, nebo i oby\u010dejn\u00e9 ch\u016fzi. Kdy\u017e je nejh\u016f\u0159, propichuje s […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13998,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-38053","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\/38053","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=38053"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38053\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13998"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38053"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38053"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38053"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}