{"id":18599,"date":"2014-11-27T09:33:37","date_gmt":"2014-11-27T08:33:37","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=18599"},"modified":"2014-11-27T09:33:37","modified_gmt":"2014-11-27T08:33:37","slug":"kuze-jako-motyli-kridla-rodice-nemocne-dcery-pomahaji-ostatnim","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=18599","title":{"rendered":"K\u016f\u017ee jako mot\u00fdl\u00ed k\u0159\u00eddla. Rodi\u010de nemocn\u00e9 dcery pom\u00e1haj\u00ed ostatn\u00edm"},"content":{"rendered":"

\u00dazkostliv\u00e1 p\u00e9\u010de p\u0159i ka\u017ed\u00e9m dotyku, o\u0161et\u0159ov\u00e1n\u00ed puch\u00fd\u0159\u016f a neust\u00e1le dezinfekce des\u00edtek drobn\u00fdch poran\u011bn\u00ed k\u016f\u017ee. Tak vypad\u00e1 p\u00e9\u010de rodi\u010d\u016f o malou Rebeku \u010cih\u00e1kovou, kter\u00e1 se narodila s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel.<\/strong><\/p>\n

PARDUBICE P\u0159ibli\u017en\u011b jedno d\u00edt\u011b z pades\u00e1ti tis\u00edc narozen\u00fdch p\u0159ich\u00e1z\u00ed na sv\u011bt s posti\u017een\u00edm takzvan\u00e9 nemoci mot\u00fdl\u00edch k\u0159\u00eddel. Choroba zp\u016fsobuje extr\u00e9mn\u011b citlivou poko\u017eku, kter\u00e1 se snadno poran\u00ed, a je tak neust\u00e1le pokryta bolestiv\u00fdmi rankami.<\/p>\n

V Pardubic\u00edch takto v srpnu p\u0159i\u0161la na sv\u011bt Rebeka \u010cih\u00e1kov\u00e1. Jej\u00ed rodi\u010de v tu chv\u00edli poznali, jak m\u00e1lo se o nemoci mluv\u00ed a jak je mal\u00e9 v\u0161eobecn\u00e9 pov\u011bdom\u00ed lid\u00ed o t\u00e9to nevyl\u00e9\u010diteln\u00e9 chorob\u011b.<\/p>\n

„Na na\u0161i princeznu jsme se stra\u0161n\u011b t\u011b\u0161ili. V\u0161echno bylo v po\u0159\u00e1dku, a\u017e jednoho dne p\u0159ilet\u011bli mot\u00fdli,“ uv\u00e1d\u00ed rodina na webov\u00fdch str\u00e1nk\u00e1ch, rebecinakridla.cz, kter\u00e9 kv\u016fli nemoci mal\u00e9 Rebeky zalo\u017eili.<\/p>\n

„Bohu\u017eel ani my je\u0161t\u011b st\u00e1le nev\u00edme, jakou formu nemoci ze t\u0159\u00ed, jak\u00e9 se vyskytuj\u00ed, vlastn\u011b Rebeka m\u00e1,“ uvedla matka Michala \u010cih\u00e1kov\u00e1.<\/p>\n

Ona i otec Rebeky Richard \u010cih\u00e1k se proto rozhodli, \u017ee pov\u011bdom\u00ed lid\u00ed o nemoci zm\u011bn\u00ed. Na webov\u00fdch str\u00e1nk\u00e1ch vedou transparentn\u00ed \u00fa\u010det, z p\u0159ijat\u00fdch dar\u016f hodlaj\u00ed pom\u00e1hat dal\u0161\u00edm posti\u017een\u00fdm d\u011btem a jejich rodi\u010d\u016fm.<\/p>\n

V\u00fd\u010det starost\u00ed s nemoc\u00ed p\u0159itom nen\u00ed mal\u00fd. „Mus\u00ed m\u00edt nap\u0159\u00edklad speci\u00e1ln\u00ed oble\u010den\u00ed, vad\u00ed j\u00ed i oby\u010dejn\u00e9 \u0161vy, kter\u00e9 j\u00ed po\u0161kozuj\u00ed k\u016f\u017ei,“ \u0159ekla \u010cih\u00e1kov\u00e1.<\/p>\n

Oble\u010den\u00ed si nakonec museli nechat dov\u00e9zt z Anglie, u na\u0161ich v\u00fdrobc\u016f speci\u00e1ln\u00edho oble\u010den\u00ed \u017e\u00e1dn\u00e9 neobjevili. A jeden kousek oble\u010den\u00ed vyjde na devades\u00e1t liber.<\/p>\n

K\u016f\u017ee Rebeky je toti\u017e velmi citliv\u00e1, ve\u0161ker\u00e9 kontakty se mus\u00ed d\u00edt s ohledem na riziko snadn\u00e9ho po\u0161kozen\u00ed k\u016f\u017ee. Ka\u017ed\u00e1 ranka je nav\u00edc n\u00e1chyln\u00e1 k infekci, p\u00e9\u010de o Rebeku proto obn\u00e1\u0161\u00ed t\u00e9m\u011b\u0159 neust\u00e1l\u00e9 dezinfekce drobn\u00fdch poran\u011bn\u00ed. „Hroz\u00ed i sr\u016fst prst\u016f, neust\u00e1le opakovan\u00e9 otev\u0159en\u00ed ran zp\u016fsobuje sr\u016fsty k\u016f\u017ee mezi prsty. Tomu se d\u00e1 zabr\u00e1nit speci\u00e1ln\u00edmi rukavicemi, kter\u00e9 sr\u016fst nedovol\u00ed,“ \u0159\u00edk\u00e1 Richard \u010cih\u00e1k.<\/p>\n

Firmy se do v\u00fdroby pom\u016fcek nehrnou. V republice je p\u0159itom asi 250 nemocn\u00fdch d\u011bt\u00ed, co\u017e nen\u00ed p\u0159\u00edli\u0161 velk\u00fd trh, a to p\u0159in\u00e1\u0161\u00ed velmi malou ochotu firem se do v\u00fdroby speci\u00e1ln\u00edch pom\u016fcek pou\u0161t\u011bt.<\/p>\n

Rodi\u010de museli absolvovat pro\u0161kolen\u00ed, jak o nemocn\u00e9 d\u00edt\u011b pe\u010dovat. O\u0161et\u0159ov\u00e1n\u00ed puch\u00fd\u0159k\u016f mus\u00ed b\u00fdt provedeno velmi opatrn\u011b a steriln\u011b, aby se otev\u0159en\u00e9 r\u00e1ny nestaly tak\u00e9 otev\u0159en\u00fdmi dve\u0159mi pro infekci. Nemoc mot\u00fdl\u00edch k\u0159\u00eddel je zat\u00edm nel\u00e9\u010diteln\u00e1. „V\u011bnuj\u00ed se tomu l\u00e9ka\u0159i v Americe, v\u0161e je v\u0161ak zat\u00edm sp\u00ed\u0161e ve f\u00e1zi v\u00fdzkumn\u00e9ho programu,“ dodal \u010cih\u00e1k. V \u010cech\u00e1ch nemocn\u00fdm d\u011btem a jejich rodi\u010d\u016fm pom\u00e1h\u00e1 sdru\u017een\u00ed Debra. Pom\u00e1h\u00e1 t\u0159eba zajistit dezinfekce, jehly na propichov\u00e1n\u00ed puch\u00fd\u0159k\u016f, v\u0161echny tyto polo\u017eky jsou ve stokorunov\u00fdch a\u017e tis\u00edcikorunov\u00fdch cen\u00e1ch.<\/p>\n

„M\u011bs\u00ed\u010dn\u011b m\u00e1me n\u00e1klady kolem deseti dvan\u00e1cti tis\u00edc,“ uvedl otec Rebeky. P\u0159esto se \u010cih\u00e1kovi rozhodli, \u017ee nebudou vyu\u017e\u00edvat pen\u011bz ob\u010dansk\u00e9ho sdru\u017een\u00ed Debra, ale naopak sami zalo\u017e\u00ed transparentn\u00ed \u00fa\u010det a ze z\u00edskan\u00fdch prost\u0159edk\u016f budou pom\u00e1hat ostatn\u00edm nemocn\u00fdm. Z\u00e1rove\u0148 cht\u011bj\u00ed \u0161\u00ed\u0159it v\u011bt\u0161\u00ed pov\u011bdom\u00ed lid\u00ed o nevyl\u00e9\u010diteln\u00e9 nemoci.<\/p>\n

—<\/p>\n

Fakta: Nemoc mot\u00fdl\u00edch k\u0159\u00eddel – Jde o vrozen\u00e9 vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed pojivov\u00e9 tk\u00e1n\u011b. Nosi\u010dem genu pro takzvanou epidermol\u00fdzu m\u016f\u017ee b\u00fdt prakticky kdokoliv. Z\u00e1kladn\u00edm p\u0159\u00edznakem nemoci mot\u00fdl\u00edch k\u0159\u00eddel je tvorba puch\u00fd\u0159\u016f po cel\u00e9m povrchu t\u011bla, postihuje tak\u00e9 sliznice, tr\u00e1vic\u00ed trakt, dechov\u00e9 \u00fastroj\u00ed nebo vylu\u010dovac\u00ed \u00fastroj\u00ed. Intelekt nemocn\u00e9ho je zcela zachov\u00e1n, \u010dasto jsou nemocn\u00ed velmi inteligentn\u00ed jedinci. Vyskytuje se p\u0159ibli\u017en\u011b u jednoho z pades\u00e1ti tis\u00edc narozen\u00fdch d\u011bt\u00ed. Zdroj: spektrumzdravi.cz<\/p>\n

Martin \u0164opek, redaktor MF DNES<\/p>\n","protected":false},"excerpt":{"rendered":"

\u00dazkostliv\u00e1 p\u00e9\u010de p\u0159i ka\u017ed\u00e9m dotyku, o\u0161et\u0159ov\u00e1n\u00ed puch\u00fd\u0159\u016f a neust\u00e1le dezinfekce des\u00edtek drobn\u00fdch poran\u011bn\u00ed k\u016f\u017ee. Tak vypad\u00e1 p\u00e9\u010de rodi\u010d\u016f o malou Rebeku \u010cih\u00e1kovou, kter\u00e1 se narodila […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14151,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-18599","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\/18599","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=18599"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/18599\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14151"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18599"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18599"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18599"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}