{"id":21078,"date":"2015-04-28T12:18:31","date_gmt":"2015-04-28T10:18:31","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=21078"},"modified":"2015-04-28T12:18:31","modified_gmt":"2015-04-28T10:18:31","slug":"brno-je-nadeji-pro-lidi-s-kuzi-jemnou-jako-motyli-kridla","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=21078","title":{"rendered":"Brno je nad\u011bj\u00ed pro lidi s k\u016f\u017e\u00ed jemnou jako mot\u00fdl\u00ed k\u0159\u00eddla"},"content":{"rendered":"

V D\u011btsk\u00e9 nemocnici maj\u00ed jako jedin\u00ed v \u010cesku speci\u00e1ln\u00ed centrum pro pacienty s nel\u00e9\u010ditelnou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, kter\u00e1 napad\u00e1 nejen k\u016f\u017ei. L\u00e9\u010dit se do n\u011bj jezd\u00ed i cizinci.<\/strong><\/p>\n

BRNO Sedmilet\u00e1 Elina a jeden\u00e1ctilet\u00e1 Elv\u00edra trp\u00ed takzvanou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. Kv\u016fli n\u00ed je jejich k\u016f\u017ee mnohem v\u00edce zraniteln\u00e1. A nejen k\u016f\u017ee. Nemoc postihuje tak\u00e9 vnit\u0159n\u00ed org\u00e1ny. Se sv\u00fdm tat\u00ednkem Alexejem p\u0159edev\u010d\u00edrem ob\u011b d\u00edvky p\u0159ilet\u011bly z Ruska do \u010cesk\u00e9 republiky. Jejich kroky sm\u011b\u0159ovaly do brn\u011bnsk\u00e9 D\u011btsk\u00e9 nemocnice, kde se na tuto vz\u00e1cnou nemoc specializuj\u00ed jako jedin\u00ed v \u010cesku.<\/p>\n

„V\u0161ichni nemocn\u00ed, d\u011bti i dosp\u011bl\u00ed, jsou v p\u00e9\u010di tohoto centra. Vyhled\u00e1van\u00e9 je pr\u00e1v\u011b proto, \u017ee je komplexn\u00ed,“ uvedla mluv\u010d\u00ed nemocnice Anna Mr\u00e1zov\u00e1. V roce 1999 jich doch\u00e1zelo jen \u010dty\u0159icet. V sou\u010dasnosti u\u017e se s t\u00edmto onemocn\u011bn\u00edm v Brn\u011b l\u00e9\u010d\u00ed 248 lid\u00ed. „To je ale t\u00edm, \u017ee se o tom mluv\u00ed, nikoli \u017ee by nemocn\u00fdch najednou p\u0159ibylo,“ vysv\u011btlila prim\u00e1\u0159ka d\u011btsk\u00e9ho ko\u017en\u00edho odd\u011blen\u00ed Hana Bu\u010dkov\u00e1.<\/p>\n

Pr\u00e1v\u011b ona je zakladatelkou nyn\u00ed pln\u011b funguj\u00edc\u00edho centra pro pacienty s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. Jeho po\u010d\u00e1tky sahaj\u00ed do roku 2001, kdy Bu\u010dkov\u00e1 za\u010dala d\u00e1vat dohromady jednotliv\u00e9 specialisty, kte\u0159\u00ed se s pacienty s touto nemoc\u00ed mohou potkat. P\u016fvodn\u011b byli \u010dty\u0159i, dnes centrum \u010d\u00edt\u00e1 osmn\u00e1ct r\u016fzn\u00fdch odborn\u00edk\u016f. Je mezi nimi radiolog, nutri\u010dn\u00ed terapeut nebo anesteziolog. Nen\u00ed to jedin\u00e1 n\u00e1pl\u0148 jejich pr\u00e1ce, ale sp\u00ed\u0161 nadstavba toho, co d\u011blaj\u00ed b\u011b\u017en\u011b na sv\u00fdch odd\u011blen\u00edch. Maj\u00ed za sebou speci\u00e1ln\u00ed \u0161kolen\u00ed pro nemoc mot\u00fdl\u00edch k\u0159\u00eddel. Spole\u010dn\u011b m\u016f\u017eou navrhnout nemocn\u00fdm tu nejlep\u0161\u00ed l\u00e9\u010dbu.<\/p>\n

Rusk\u00e9 d\u00edvky maj\u00ed podle Bu\u010dkov\u00e9 st\u0159edn\u011b t\u011b\u017ekou nemoc. „D\u011bv\u010data \u010dek\u00e1 dvoudenn\u00ed maraton, kdy nav\u0161t\u00edv\u00ed stomatologa, plastick\u00e9ho chirurga, budou m\u00edt pohovor s nutri\u010dn\u00ed terapeutkou a dal\u0161\u00edmi. Maj\u00ed tak\u00e9 polykac\u00ed pot\u00ed\u017ee, tak\u017ee nav\u0161t\u00edv\u00ed i radiologii a na z\u00e1v\u011br samoz\u0159ejm\u011b budou u dermatologa,“ popsala l\u00e9ka\u0159ka, co \u010dek\u00e1 mal\u00e9 pacientky. Ka\u017ed\u00fd specialista jim pom\u016f\u017ee, jak bude nejl\u00e9pe moci ve sv\u00e9m oboru.<\/p>\n

Otec Alexej \u0159\u00edk\u00e1, \u017ee nemoc m\u011bly ob\u011b dcery od narozen\u00ed. Rodina nem\u011bla tu\u0161en\u00ed, co to je. V Moskv\u011b podobn\u00e9 centrum, jako je v Brn\u011b, teprve vznik\u00e1. „Ka\u017ed\u00e1 informace pro n\u00e1s bude d\u016fle\u017eit\u00e1 a budeme r\u00e1di za jak\u00e9koliv zlep\u0161en\u00ed nemoci,“ sd\u011blil otec d\u00edvek. Celou l\u00e9\u010dbu, kter\u00e1 stoj\u00ed desetitis\u00edce, si mus\u00ed \u2013 na rozd\u00edl od \u010desk\u00fdch pacient\u016f \u2013 hradit sami. Jestli jim pom\u016f\u017ee s n\u00e1klady n\u011bjak\u00e1 organizace, otec nev\u011bd\u011bl.<\/p>\n

Podle Bu\u010dkov\u00e9 maj\u00ed lid\u00e9 po zm\u00ednce o nemoci p\u0159ed o\u010dima ty nejt\u011b\u017e\u0161\u00ed p\u0159\u00edpady, kdy nemocn\u00fdm sr\u016fstaj\u00ed prsty a zdravotn\u00ed stav jim nedovoluje \u017e\u00edt norm\u00e1ln\u011b. V\u00edce ne\u017e polovina lid\u00ed trp\u00edc\u00edch nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel v\u0161ak vede relativn\u011b norm\u00e1ln\u00ed \u017eivot, studuj\u00ed \u0161koly a chod\u00ed do pr\u00e1ce.<\/p>\n

„Velk\u00fd v\u00fdznam m\u00e1 v dne\u0161n\u00ed dob\u011b molekul\u00e1rn\u00ed diagnostika, kter\u00e1 je ur\u010den\u00e1 pro \u0161irokou rodinu. Nikdo z n\u00e1s toti\u017e nev\u00ed, kdo nese zmutovan\u00fd gen,“ poznamenala Bu\u010dkov\u00e1. Kdy\u017e se setkaj\u00ed dva partne\u0159i a oba maj\u00ed tento vadn\u00fd gen, tak sami nemocn\u00ed nejsou, nicm\u00e9n\u011b jsou p\u0159ena\u0161e\u010di. Pravd\u011bpodobnost, \u017ee jejich d\u00edt\u011b bude nemocn\u00e9, je p\u011btadvacet procent. V pades\u00e1ti procentech je pravd\u011bpodobnost, \u017ee op\u011bt ponese zmutovan\u00fd gen, a jen ve \u010dtvrtin\u011b p\u0159\u00edpad\u016f bude zcela zdrav\u00e9.“Molekul\u00e1rn\u00ed diagnostiku m\u016f\u017eeme pou\u017e\u00edt, ov\u0161em a\u017e se objev\u00ed prvn\u00ed v\u00fdskyt v rodin\u011b. Tomu prvn\u00edmu nejsme schopni zabr\u00e1nit,“ podotkla prim\u00e1\u0159ka.<\/p>\n

Nemoc mot\u00fdl\u00edch k\u0159\u00eddel nen\u00ed l\u00e9\u010diteln\u00e1. Je to vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, jeho\u017e p\u0159\u00edznaky lze pouze zm\u00edr\u0148ovat, ale nejde zat\u00edm zcela vyl\u00e9\u010dit. „Nikde na sv\u011bt\u011b je\u0161t\u011b nena\u0161li zp\u016fsob, jak zm\u011bnit zmutovan\u00fd gen,“ dodala Bu\u010dkov\u00e1. Posti\u017een\u00ed m\u016f\u017eou b\u00fdt lid\u00e9 hned od narozen\u00ed, ale nemoc se m\u016f\u017ee projevit t\u0159eba a\u017e po \u010dty\u0159ech letech \u017eivota, nebo dokonce v dosp\u011blosti.<\/p>\n

—<\/p>\n

Fakta Nemoc mot\u00fdl\u00edch k\u0159\u00eddel
\n* Odborn\u011b bul\u00f3zn\u00ed epidermol\u00fdza, vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, kter\u00e9 zp\u016fsobuj\u00ed zmutovan\u00e9 geny.
\n* Nemoc postihuje k\u016f\u017ei, sliznice, posti\u017een\u00e9 jsou vlasy, zuby i nehty.
\n* U\u017e p\u0159i men\u0161\u00edm tlaku vznikaj\u00ed na k\u016f\u017ei bolestiv\u00e9 puch\u00fd\u0159e. Tak\u00e9 proto maj\u00ed pacienti \u010dasto polykac\u00ed pot\u00ed\u017ee. T\u011b\u017ece nemocn\u00ed nem\u016f\u017eou polykat v\u016fbec.
\n* V \u010cesk\u00e9 republice se s touto nemoc\u00ed l\u00e9\u010d\u00ed 248 d\u011bt\u00ed i dosp\u011bl\u00fdch na speci\u00e1ln\u00edm odd\u011blen\u00ed v brn\u011bnsk\u00e9 D\u011btsk\u00e9 nemocnici. Nejbli\u017e\u0161\u00ed podobn\u00e9 centrum maj\u00ed v rakousk\u00e9m Salzburgu.<\/p>\n

Marek Osouch, spolupracovn\u00edk MF DNES<\/p>\n

Mlad\u00e1 fronta DNES<\/p>\n","protected":false},"excerpt":{"rendered":"

V D\u011btsk\u00e9 nemocnici maj\u00ed jako jedin\u00ed v \u010cesku speci\u00e1ln\u00ed centrum pro pacienty s nel\u00e9\u010ditelnou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, kter\u00e1 napad\u00e1 nejen k\u016f\u017ei. L\u00e9\u010dit se do n\u011bj […]<\/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-21078","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\/21078","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=21078"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21078\/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=21078"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21078"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21078"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}