\u0160estilet\u00fd Pet\u0159\u00edk z Liberce se pot\u00fdk\u00e1 se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 postupn\u011b oslabuje jeho svaly. Duchennovu svalovou dystrofii u n\u011bj l\u00e9ka\u0159i odhalili pot\u00e9, co ve t\u0159ech letech skon\u010dil v nemocnici s vysok\u00fdmi hore\u010dkami.<\/p>\n\n\n\n
Pet\u0159\u00edk po narozen\u00ed nem\u011bl \u017e\u00e1dn\u00e9 zjevn\u00e9 zdravotn\u00ed obt\u00ed\u017ee. Postupn\u011b si ale jeho rodi\u010de za\u010dali v\u0161\u00edmat v\u011bc\u00ed, kter\u00e9 v nich vzbuzovaly obavy. Po prvn\u00edch narozenin\u00e1ch st\u00e1le nemluvil a \u010dasto zakop\u00e1val, a to i na rovn\u00e9m povrchu.<\/p>\n\n\n\n
Zlom p\u0159i\u0161el ve t\u0159ech letech. Pet\u0159\u00edk skon\u010dil kv\u016fli vysok\u00fdm hore\u010dk\u00e1m v nemocnici a krevn\u00ed testy uk\u00e1zaly v\u00fdrazn\u011b zv\u00fd\u0161en\u00e9 hodnoty jatern\u00edch enzym\u016f. N\u00e1sledovala dal\u0161\u00ed vy\u0161et\u0159en\u00ed a nakonec ne\u010dekan\u00e1 diagn\u00f3za \u2013 Duchennova svalov\u00e1 dystrofie. Potvrdil ji genetick\u00fd test.<\/p>\n\n\n\n
Zv\u00fd\u0161en\u00e9 hodnoty nemus\u00ed ukazovat jen na j\u00e1tra<\/p>\n\n\n\n
Jak upozor\u0148uje pacientsk\u00e1 organizace Parent Project, zv\u00fd\u0161en\u00e9 hodnoty jatern\u00edch enzym\u016f ALT a AST nemus\u00ed souviset pouze s onemocn\u011bn\u00edm jater. Tyto enzymy se nach\u00e1zej\u00ed tak\u00e9 ve svalech a jejich zv\u00fd\u0161en\u00e1 hladina m\u016f\u017ee upozornit pr\u00e1v\u011b na svalov\u00e9 po\u0161kozen\u00ed.<\/p>\n\n\n\n
Duchennova svalov\u00e1 dystrofie je vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 postihuje p\u0159edev\u0161\u00edm chlapce. Jejich t\u011blo nevytv\u00e1\u0159\u00ed dostatek dystrofinu, tedy b\u00edlkoviny d\u016fle\u017eit\u00e9 pro spr\u00e1vnou funkci svalov\u00fdch bun\u011bk. Svaly kv\u016fli tomu postupn\u011b sl\u00e1bnou.<\/p>\n\n\n\n
Prvn\u00ed p\u0159\u00edznaky se mohou projevovat nap\u0159\u00edklad \u010dast\u011bj\u0161\u00edmi p\u00e1dy, hor\u0161\u00edm b\u011bhem nebo probl\u00e9my p\u0159i ch\u016fzi do schod\u016f. Postupem \u010dasu m\u016f\u017ee nemoc zas\u00e1hnout tak\u00e9 srde\u010dn\u00ed a d\u00fdchac\u00ed svaly.<\/p>\n\n\n\n
\u201eDuchennovu svalovou dystrofii zat\u00edm neum\u00edme vyl\u00e9\u010dit. Odborn\u00e1 p\u00e9\u010de a l\u00e9\u010dba ale mohou jej\u00ed pr\u016fb\u011bh zpomalit a pom\u00e1haj\u00ed d\u011btem zachovat co nejlep\u0161\u00ed kvalitu \u017eivota,\u201c \u0159\u00edk\u00e1 \u0159editelka obecn\u011b prosp\u011b\u0161n\u00e9 spole\u010dnosti \u017divot d\u011btem Maria K\u0159epelkov\u00e1.<\/p>\n\n\n\n
Podle \u00fadaj\u016f organizace se Duchennova svalov\u00e1 dystrofie vyskytuje p\u0159ibli\u017en\u011b u jednoho z p\u011bti tis\u00edc narozen\u00fdch chlapc\u016f. V \u010cesk\u00e9 republice s n\u00ed \u017eije zhruba 350 lid\u00ed.<\/p>\n\n\n\n
Fyzioterapie, hipoterapie i l\u00e1zn\u011b<\/p>\n\n\n\n
Pro Pet\u0159\u00edka a jeho rodinu znamen\u00e1 diagn\u00f3za pravidelnou p\u00e9\u010di. Chlapec doch\u00e1z\u00ed na fyzioterapii, logopedii i hipoterapii a dvakr\u00e1t ro\u010dn\u011b jezd\u00ed do l\u00e1zn\u00ed. U\u017e\u00edv\u00e1 tak\u00e9 kortikoidy, kter\u00e9 mu podle rodiny maj\u00ed pom\u00e1hat zpomalovat \u00fabytek svalov\u00e9 s\u00edly. L\u00e9\u010dba v\u0161ak p\u0159in\u00e1\u0161\u00ed i vedlej\u0161\u00ed \u00fa\u010dinky, s nimi\u017e se pot\u00fdk\u00e1.<\/p>\n\n\n\n
Rodi\u010de se sna\u017e\u00ed ud\u011blat maximum pro to, aby jejich syn mohl co nejd\u00e9le chodit a z\u016fstal samostatn\u00fd.<\/p>\n\n\n\n
\u201eL\u00e9ka\u0159i rodi\u010de p\u0159ipravili na mo\u017enost, \u017ee kolem des\u00e1t\u00e9ho roku \u017eivota bude Pet\u0159\u00edk pot\u0159ebovat invalidn\u00ed voz\u00edk. Rodina se ze v\u0161ech sil sna\u017e\u00ed, aby k tomu do\u0161lo co nejpozd\u011bji,\u201c dopl\u0148uje K\u0159epelkov\u00e1.<\/p>\n\n\n\n
Za snahou udr\u017eet Pet\u0159\u00edka co nejd\u00e9le v pohybu jsou pravideln\u00e9 rehabilitace, l\u00e1ze\u0148sk\u00e9 pobyty i ka\u017edodenn\u00ed p\u00e9\u010de. Pro rodinu p\u0159edstavuj\u00ed zna\u010dn\u00e9 n\u00e1roky nejen na \u010das a s\u00edly, ale tak\u00e9 na rodinn\u00fd rozpo\u010det.<\/p>\n\n\n\n
Pomoci m\u00e1 tak\u00e9 listopadov\u00e1 sb\u00edrka<\/p>\n\n\n\n
Rodiny v\u00e1\u017en\u011b nemocn\u00fdch d\u011bt\u00ed podporuje tak\u00e9 sb\u00edrka Srdce d\u011btem, kterou organizace \u017divot d\u011btem letos po\u0159\u00e1d\u00e1 po\u0161estn\u00e1ct\u00e9.<\/p>\n\n\n\n
Od 2. do 15. listopadu se do n\u00ed mohou lid\u00e9 zapojit koup\u00ed srd\u00ed\u010dkov\u00e9 samolepky za 30 korun v prodejn\u00e1ch Lidl. P\u0159isp\u011bt lze tak\u00e9 na transparentn\u00ed \u00fa\u010det 1117771700\/5500 s variabiln\u00edm symbolem 4444 nebo platebn\u00ed kartou prost\u0159ednictv\u00edm webu sb\u00edrky. V\u00fdt\u011b\u017eek je ur\u010den na podporu p\u00e9\u010de o v\u00e1\u017en\u011b nemocn\u00e9 d\u011bti, mezi kter\u00e9 pat\u0159\u00ed tak\u00e9 Pet\u0159\u00edk z Liberce.<\/p>\n\n\n\n
Ji\u0159\u00ed Louda<\/p>\n\n\n\n
Libereck\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/liberecky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" \u0160estilet\u00fd Pet\u0159\u00edk z Liberce se pot\u00fdk\u00e1 se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 postupn\u011b oslabuje jeho svaly. Duchennovu svalovou dystrofii u n\u011bj l\u00e9ka\u0159i odhalili pot\u00e9, co ve […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":41873,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-65562","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\/65562","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=65562"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/65562\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/41873"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=65562"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=65562"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=65562"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}