P\u0159ibli\u017en\u011b za jeden t\u00fdden se dvaadvacetilet\u00fd sportovec a fitness tren\u00e9r \u0160imon Kocourek pokus\u00ed p\u0159eb\u011bhnout \u010ceskou republiku. Startuje v pond\u011bl\u00ed 30. z\u00e1\u0159\u00ed, cestou se k n\u011bmu mohou p\u0159ipojit dal\u0161\u00ed. Sv\u00fdm kouskem chce zviditelnit fenylketonurii (PKU), co\u017e je vz\u00e1cn\u00e9 metabolick\u00e9 onemocn\u011bn\u00ed. Lid\u00e9 p\u0159i n\u011bm nemohou j\u00edst t\u00e9m\u011b\u0159 \u017e\u00e1dn\u00e9 b\u00edlkoviny a speci\u00e1ln\u00ed dieta je n\u00e1kladn\u00e1. B\u011bh je spojen i s dobro\u010dinnou sb\u00edrkou na podporu organizace sdru\u017euj\u00edc\u00ed pacienty \u010di rodi\u010de nemocn\u00fdch d\u011bt\u00ed.<\/p>\n\n\n\n
\u0160est set \u0161edes\u00e1t kilometr\u016f chce p\u0159ibli\u017en\u011b za sedm a\u017e osm dn\u016f ub\u011bhnout dvaadvacetilet\u00fd sportovec a fitness tren\u00e9r \u0160imon Kocourek. Denn\u011b by r\u00e1d zdolal asi osmdes\u00e1t kilometr\u016f. B\u011b\u017eet bude z nejz\u00e1padn\u011bj\u0161\u00ed do nejv\u00fdchodn\u011bj\u0161\u00ed \u010d\u00e1sti zem\u011b, p\u0159i\u010dem\u017e kdekoli na trase se k n\u011bmu mohou p\u0159ipojit dal\u0161\u00ed b\u011b\u017eci.<\/p>\n\n\n\n
Ve\u0161ker\u00e9 informace budou pr\u016fb\u011b\u017en\u011b zve\u0159ej\u0148ovan\u00e9 na jeho soci\u00e1ln\u00edch s\u00edt\u00edch. \u201eBude m\u011b doprov\u00e1zet p\u011bti\u010dlenn\u00fd t\u00fdm, p\u0159i\u010dem\u017e \u010d\u00e1st z n\u011bj se bude starat o dokumentaci b\u011bhu. Lid\u00e9 si m\u011b budou moci na trase v\u017edy naj\u00edt,\u201c \u0159ekl Den\u00edku.<\/p>\n\n\n\n
N\u011bkolikadenn\u00edm b\u011bhem si chce splnit sv\u016fj sen a tak\u00e9 podpo\u0159it lidi trp\u00edc\u00ed fenylketonuri\u00ed (PKU), co\u017e je vz\u00e1cn\u00e9 metabolick\u00e9 onemocn\u011bn\u00ed, p\u0159i n\u011bm\u017e nelze j\u00edst tak\u0159ka \u017e\u00e1dn\u00e9 b\u00edlkoviny. \u201eJe to moje osobn\u00ed v\u00fdzva. A vzhledem k tomu, \u017ee v kv\u011btnu se br\u00e1chovi narodil syn s PKU, \u0159ekl jsem mu, \u017ee bych r\u00e1d nemoc zviditelnil, aby se o n\u00ed lid\u00e9 v\u00edc dozv\u011bd\u011bli. Souhlasil,\u201c uvedl Kocourek.<\/p>\n\n\n\n
Propojil se proto se z\u00e1stupci N\u00e1rodn\u00edho sdru\u017een\u00ed PKU a jin\u00fdch d\u011bdi\u010dn\u00fdch metabolick\u00fdch poruch, kte\u0159\u00ed n\u00e1pad uv\u00edtali. B\u011bh je spojen i s dobro\u010dinnou sb\u00edrkou na podporu t\u00e9to pacientsk\u00e9 organizace.<\/p>\n\n\n\n
Mlad\u00fd sportovec je r\u00e1d, \u017ee jeho aktivita u\u017e p\u0159ed za\u010d\u00e1tkem b\u011bhu vzbudila velk\u00fd ohlas. \u201eUpout\u00e1vka na soci\u00e1ln\u00edch s\u00edt\u00edch m\u00e1 u\u017e 160 tis\u00edc zhl\u00e9dnut\u00ed,\u201c sd\u011blil ve \u010dtvrtek 26. z\u00e1\u0159\u00ed.<\/p>\n\n\n\n
Lid\u00ed, kte\u0159\u00ed jeho akci fand\u00ed, p\u0159ib\u00fdv\u00e1. Kontaktovali ho pacienti i rodi\u010de d\u011bt\u00ed, kter\u00e9 se s nemoc\u00ed pot\u00fdkaj\u00ed. Tr\u00e1p\u00ed je toti\u017e, kolik pot\u00ed\u017e\u00ed je s n\u00ed spojeno a jak m\u00e1lo se o n\u00ed v\u00ed.<\/p>\n\n\n\n
Drah\u00e1 speci\u00e1ln\u00ed dieta<\/p>\n\n\n\n
P\u0159i PKU, kterou v \u010cesku trp\u00ed asi dev\u011bt set pacient\u016f, t\u011blo nedok\u00e1\u017ee odbourat aminokyselinu fenylalanin, obsa\u017eenou v b\u00edlkovin\u00e1ch. \u201eJedinou l\u00e9\u010dbou je kombinace speci\u00e1ln\u00edch aminokyselinov\u00fdch sm\u011bs\u00ed (takzvan\u00fdch prepar\u00e1t\u016f) a extr\u00e9mn\u011b n\u00e1kladn\u00e9 n\u00edzkob\u00edlkovinn\u00e9 diety. Bez jej\u00edho dodr\u017eov\u00e1n\u00ed doch\u00e1z\u00ed k nevratn\u00e9mu po\u0161kozen\u00ed mozku, u d\u011bt\u00ed k t\u011b\u017ek\u00e9 ment\u00e1ln\u00ed retardaci,\u201c nast\u00ednila m\u00edstop\u0159edsedkyn\u011b NSPKU Eva Bl\u00e1hov\u00e1.<\/p>\n\n\n\n
Jeliko\u017e je z\u00e1rove\u0148 matkou p\u011btilet\u00e9ho syna s PKU, v\u00ed moc dob\u0159e, o \u010dem mluv\u00ed. \u201eJsem vd\u011b\u010dn\u00e1, \u017ee prepar\u00e1ty nemocn\u00fdm v pln\u00e9 v\u00fd\u0161i hrad\u00ed st\u00e1t. Probl\u00e9m ale je, \u017ee extr\u00e9mn\u011b drahou dietu, na kterou jsou nemocn\u00ed odk\u00e1z\u00e1ni, st\u00e1t neplat\u00ed. Sna\u017e\u00edme se \u0161\u00ed\u0159it osv\u011btu a upozornit na to, \u017ee nemocn\u00ed opravdu nemohou j\u00edst tak\u0159ka nic a p\u0159\u00edsn\u00e1 dieta je pro n\u011b \u017eivotn\u011b d\u016fle\u017eit\u00e1,\u201c \u0159ekla.<\/p>\n\n\n\n
Synovi mus\u00ed kupovat speci\u00e1ln\u00ed mouku \u010di t\u011bstoviny, kter\u00e9 vyjdou n\u00e1sobn\u011b dr\u00e1\u017e ne\u017e ty klasick\u00e9. \u201eM\u016f\u017ee j\u00edst jen n\u011bkter\u00e9 druhy ovoce a zeleniny, a to v p\u0159esn\u011b zv\u00e1\u017een\u00e9m mno\u017estv\u00ed. S v\u00fdjimkou oleje, cukru a soli se v\u0161e mus\u00ed na gram v\u00e1\u017eit a po\u010d\u00edtat. Pro dobr\u00e9 fungov\u00e1n\u00ed organismu ale nemocn\u00ed samoz\u0159ejm\u011b pot\u0159ebuj\u00ed i jin\u00e9 j\u00eddlo,\u201c poznamenala.<\/p>\n\n\n\n
N\u011bkter\u00e9 zdravotn\u00ed poji\u0161\u0165ovny na speci\u00e1ln\u00ed diety, v\u010detn\u011b n\u00edzkob\u00edlkovinn\u00e9, p\u0159isp\u00edvaj\u00ed z fond\u016f prevence. Nejv\u00edce V\u0161eobecn\u00e1 zdravotn\u00ed poji\u0161\u0165ovna, a to maxim\u00e1ln\u011b 12 tis\u00edc korun ro\u010dn\u011b. Tento p\u0159\u00edsp\u011bvek na speci\u00e1ln\u00ed potraviny zakoupen\u00e9 v roce 2024 je ur\u010den d\u011btem a mladistv\u00fdm do 18 let a student\u016fm do 26 let. Ostatn\u00ed poji\u0161\u0165ovny p\u0159isp\u00edvaj\u00ed m\u00e9n\u011b. Podle Bl\u00e1hov\u00e9 ale dieta vyjde m\u011bs\u00ed\u010dn\u011b zhruba o p\u011bt tis\u00edc korun v\u00edce, ne\u017e zaplat\u00ed za j\u00eddlo zdrav\u00fd \u010dlov\u011bk. Dieta je celo\u017eivotn\u00ed a mus\u00ed ji dodr\u017eovat i dosp\u011bl\u00ed, pro kter\u00e9 je obzvl\u00e1\u0161t\u011b finan\u010dn\u011b n\u00e1ro\u010dn\u00e1.<\/p>\n\n\n\n
Dosp\u011bl\u00e9mu ale st\u00e1t na dietu p\u0159isp\u00edv\u00e1 jen za p\u0159edpokladu, \u017ee je v hmotn\u00e9 nouzi a pob\u00edr\u00e1 p\u0159\u00edsp\u011bvek na \u017eivobyt\u00ed. V takov\u00e9m p\u0159\u00edpad\u011b m\u00e1 n\u00e1rok z\u00edskat od \u00da\u0159adu pr\u00e1ce na n\u00edzkob\u00edlkovinnou dietu m\u011bs\u00ed\u010dn\u011b 1511 korun. \u201eZdravotn\u011b znev\u00fdhodn\u011bn\u00ed jsou jednou ze skupin, kter\u00e9 jsou r\u016fstem cen nejv\u00edce ohro\u017een\u00e9,\u201c od\u016fvodnil to p\u0159ed dv\u011bma lety, kdy byla \u010d\u00e1stka valorizov\u00e1na, ministr pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed Marian Jure\u010dka.<\/p>\n\n\n\n
Pen\u011b\u017eenku ale dieta prov\u011btr\u00e1 i dal\u0161\u00edm lidem. \u201eSna\u017e\u00edme se, aby tomu bylo jako v jin\u00fdch zem\u00edch, t\u0159eba ve Francii \u010di na Slovensku, kde st\u00e1t vedle zm\u00edn\u011bn\u00fdch prepar\u00e1t\u016f hrad\u00ed i speci\u00e1ln\u00ed n\u00edzkob\u00edlkovinn\u00e9 potraviny, kter\u00e9 p\u0159edep\u00ed\u0161e l\u00e9ka\u0159,\u201c poznamenala Bl\u00e1hov\u00e1. \u00dahradov\u00e1 vyhl\u00e1\u0161ka na p\u0159\u00ed\u0161t\u00ed rok (stanovuj\u00edc\u00ed pravidla pro v\u00fdpo\u010dty \u00fahrad ze zdravotn\u00edho poji\u0161t\u011bn\u00ed) v tomto sm\u011bru ale se zm\u011bnou nepo\u010d\u00edt\u00e1. Stejn\u011b tak se organizace sna\u017e\u00ed kup\u0159\u00edkladu o to, aby dieta byla nemocn\u00fdm k dispozici p\u0159i hospitalizaci v nemocnici.<\/p>\n\n\n\n
Koloto\u010d p\u00e9\u010de o zdrav\u00ed<\/p>\n\n\n\n
Nemoc u d\u00edt\u011bte l\u00e9ka\u0159i zjist\u00ed u\u017e v porodnici novorozeneck\u00fdm screeningem (odb\u011brem z pati\u010dky) a intenzivn\u00ed celo\u017eivotn\u00ed l\u00e9\u010dba za\u010d\u00edn\u00e1 do 5. dne po narozen\u00ed. Fenylketonurie znamen\u00e1 nikdy nekon\u010d\u00edc\u00ed p\u00e9\u010di o zdrav\u00ed. Kontroly, nutri\u010dn\u00ed konzultace, specializovan\u00e1 vy\u0161et\u0159en\u00ed. Hladina fenylalaninu v t\u011ble se monitoruje pravideln\u00fdm dom\u00e1c\u00edm odb\u011brem (tzv. such\u00e9 kapky). Pokud je zv\u00fd\u0161en\u00e1 nebo n\u00edzk\u00e1, mozek je v ohro\u017een\u00ed a l\u00e9ka\u0159 upravuje povolen\u00e9 mno\u017estv\u00ed fenylalaninu. K v\u00fdkyv\u016fm hladiny doch\u00e1z\u00ed p\u0159i nemoci, velk\u00e9m intervalu mezi j\u00eddly, p\u0159i stresu \u010di dietn\u00ed chyb\u011b. \u017deny s PKU nesm\u011bj\u00ed nepl\u00e1novan\u011b ot\u011bhotn\u011bt \u2013 narodilo by se t\u011b\u017ece posti\u017een\u00e9 d\u00edt\u011b. U\u017e rok p\u0159ed po\u010det\u00edm mus\u00ed za\u010d\u00edt s dietou je\u0161t\u011b p\u0159\u00edsn\u011bj\u0161\u00ed ne\u017e norm\u00e1ln\u011b.<\/p>\n\n\n\n
Zdroj: NSPKU<\/p>\n\n\n\n
Andrea Cerqueirov\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":" P\u0159ibli\u017en\u011b za jeden t\u00fdden se dvaadvacetilet\u00fd sportovec a fitness tren\u00e9r \u0160imon Kocourek pokus\u00ed p\u0159eb\u011bhnout \u010ceskou republiku. Startuje v pond\u011bl\u00ed 30. z\u00e1\u0159\u00ed, cestou se k n\u011bmu […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":30297,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-52235","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\/52235","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=52235"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/52235\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/30297"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=52235"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=52235"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=52235"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}