{"id":4045,"date":"2022-05-05T17:08:17","date_gmt":"2022-05-05T15:08:17","guid":{"rendered":"https:\/\/tlustacara.cz\/?p=4045"},"modified":"2023-10-25T13:50:04","modified_gmt":"2023-10-25T11:50:04","slug":"sma-lecba","status":"publish","type":"post","link":"https:\/\/tlustacara.cz\/en\/sma\/sma-lecba\/","title":{"rendered":"Spin\u00e1ln\u00ed svalov\u00e1 atrofie: L\u00e9\u010dba"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"4045\" class=\"elementor elementor-4045\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<div class=\"elementor-inner\">\n\t\t\t\t<div class=\"elementor-section-wrap\">\n\t\t\t\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-fb60dd7 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"fb60dd7\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t\t\t<div class=\"elementor-row\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-bf172ef\" data-id=\"bf172ef\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-column-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5833583 elementor-widget elementor-widget-heading\" data-id=\"5833583\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.16.0 - 17-10-2023 *\/\n.elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h1 class=\"elementor-heading-title elementor-size-default\">Spin\u00e1ln\u00ed svalov\u00e1 atrofie: L\u00e9\u010dba<\/h1>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8894d8d elementor-widget elementor-widget-image\" data-id=\"8894d8d\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.16.0 - 17-10-2023 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t<div class=\"elementor-image\">\n\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" loading=\"lazy\" width=\"1024\" height=\"682\" src=\"https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-1024x682.jpg\" class=\"attachment-large size-large wp-image-4046\" alt=\"um\u011bleck\u00e1 skupina tlust\u00e1 \u010d\u00e1ra SMA l\u00e9\u010dba\" srcset=\"https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-1024x682.jpg 1024w, https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-300x200.jpg 300w, https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-768x511.jpg 768w, https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-391x260.jpg 391w, https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba-18x12.jpg 18w, https:\/\/tlustacara.cz\/wp-content\/uploads\/2022\/05\/SMA-lecba.jpg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cf39c23 elementor-widget elementor-widget-text-editor\" data-id=\"cf39c23\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.16.0 - 17-10-2023 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t\t<div class=\"elementor-text-editor elementor-clearfix\">\n\t\t\t\t<p>Po del\u0161\u00ed dob\u011b tu m\u00e1me dal\u0161\u00ed SMA ok\u00e9nko, dnes trochu veselej\u0161\u00ed \u2013 \u0159ekneme si toti\u017e o l\u00e9\u010db\u011b.<br \/><br \/>\ud83d\udfea Na za\u010d\u00e1tek pro v\u00e1s ale m\u00e1me skv\u011blou a \u010derstvou zpr\u00e1vu, a to, \u017ee se za\u010d\u00e1tkem ledna v \u010cesk\u00e9 republice za\u010dal prov\u00e1d\u011bt screening SMA v t\u011bhotenstv\u00ed, a tud\u00ed\u017e je diagnostika a za\u010d\u00e1tek l\u00e9\u010dby d\u00edky v\u010dasn\u00e9mu z\u00e1chytu \u00fa\u010dinn\u011bj\u0161\u00ed ne\u017e kdy p\u0159edt\u00edm. Doslova tedy za\u017e\u00edv\u00e1me revoluci l\u00e9\u010dby SMA na vlastn\u00ed o\u010di a v re\u00e1ln\u00e9m \u010dase.<br \/><br \/>\ud83d\udfe7 Nyn\u00ed k samotn\u00e9 l\u00e9\u010db\u011b SMA, kter\u00e1 je finan\u010dn\u011b i \u010dasov\u011b velmi n\u00e1kladn\u00e1, jeliko\u017e se skl\u00e1d\u00e1 z farmakologick\u00e9 terapie, ale tak\u00e9 z cvi\u010den\u00ed, rehabilitac\u00ed a protahov\u00e1n\u00ed.<br \/><br \/>\ud83d\udfe8 V posledn\u00edch letech nab\u00edr\u00e1 klinick\u00fd v\u00fdzkum SMA velk\u00e9 obr\u00e1tky &#8211; na trhu se toti\u017e objevily dva l\u00e9ky Spinraza a Zolgensma, u kter\u00fdch cena pod\u00e1n\u00ed dosahuje a\u017e do v\u00fd\u0161e milion\u016f korun, ale kter\u00e9 tak\u00e9 od prosince 2020 propl\u00e1c\u00ed zdravotn\u00ed poji\u0161\u0165ovna. V\u00fdsledky t\u00e9to l\u00e9\u010dby jsou velmi dobr\u00e9, dok\u00e1\u017ee pr\u016fb\u011bh zpomalit nebo zcela zastavit, a jej\u00ed pod\u00e1n\u00ed se nedoporu\u010duje pouze v ojedin\u011bl\u00fdch p\u0159\u00edpadech. U l\u00e9\u010den\u00fdch pacient\u016f se \u00fasp\u011b\u0161nost l\u00e9\u010dby pohybuje nad 90 %.<br \/><br \/>\ud83d\udfe9 Ned\u00edlnou a doprovodnou sou\u010d\u00e1st\u00ed l\u00e9\u010dby je rehabilitace. Je to velmi rozs\u00e1hl\u00fd komplex r\u016fznorod\u00fdch cvi\u010den\u00ed, mas\u00e1\u017e\u00ed a protahov\u00e1n\u00ed zahrnuj\u00edc\u00edch terapie ve vod\u011b, s r\u016fzn\u00fdmi pom\u016fckami, se zv\u00ed\u0159aty ale tak\u00e9 dom\u00e1c\u00ed cvi\u010den\u00ed. Rozh\u00fdbat se mus\u00ed v\u0161e od velk\u00fdch sval\u016f, jako jsou nap\u0159\u00edklad z\u00e1da a nohy, a\u017e po ty nejmen\u0161\u00ed motorick\u00e9 funkce, jako je \u00fachop tu\u017eky nebo hrn\u00ed\u010dku. V\u0161ichni pacienti s SMA a jejich rodiny jsou velc\u00ed bojovn\u00edci, a my u\u017e se nem\u016f\u017eeme do\u010dkat, a\u017e se na tuto n\u00e1ro\u010dnou cestu vyd\u00e1me s nimi.<br \/><br \/>Sledujte n\u00e1s, ji\u017e brzy se m\u016f\u017eete t\u011b\u0161it na p\u0159\u00edb\u011bh o princezn\u011b\u00a0<a class=\"notranslate\" tabindex=\"0\" href=\"https:\/\/www.instagram.com\/majdalenka_sma\/\">@majdalenka_sma<\/a><\/p>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>SMA, neboli spin\u00e1ln\u00ed svalov\u00e1 atrofie je genetick\u00e1 choroba projevuj\u00edc\u00ed se p\u0159ev\u00e1\u017en\u011b u velmi mal\u00fdch d\u011bt\u00ed. Jak se l\u00e9\u010d\u00ed?<\/p>","protected":false},"author":1,"featured_media":4046,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"footnotes":""},"categories":[65],"tags":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v21.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Spin\u00e1ln\u00ed svalov\u00e1 atrofie: L\u00e9\u010dba - Tlust\u00e1 \u010d\u00e1ra<\/title>\n<meta name=\"description\" content=\"SMA, neboli spin\u00e1ln\u00ed svalov\u00e1 atrofie je genetick\u00e1 choroba projevuj\u00edc\u00ed se p\u0159ev\u00e1\u017en\u011b u velmi mal\u00fdch d\u011bt\u00ed. 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