{"id":1709,"date":"2021-04-19T10:59:12","date_gmt":"2021-04-19T08:59:12","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1709"},"modified":"2021-04-19T11:04:47","modified_gmt":"2021-04-19T09:04:47","slug":"1709","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2021\/04\/19\/1709\/","title":{"rendered":""},"content":{"rendered":"<p><strong>MODERN\u00c1 LIE\u010cBA CYSTICKEJ FIBR\u00d3ZY PRIN\u00c1\u0160A V\u00ddSLEDKY<\/strong><\/p>\n<p><strong> \u201cLie\u010dbu dostala skupina CF pacientov s naj\u0165a\u017e\u0161ou verziou genetickej poruchy. Pristupovali sme preto k lie\u010dbe s ve\u013ekou n\u00e1dejou, ale aj re\u0161pektom,\u201d<\/strong> vrav\u00ed \u010dlen pracovnej skupiny pre modern\u00fa lie\u010dbu CF a otec CF pacienta Ing. Peter \u0160tep\u00e1nek.<\/p>\n<p>K lie\u010dbe sa dostalo nie\u010do cez 50 CF pacientov a pribli\u017ene po 6 mesiacoch u\u017e\u00edvania organiz\u00e1cie pacientov vykonali podrobn\u00fd prieskum o dopadoch lie\u010dby. \u201cV\u00fdsledky z priamych odpoved\u00ed na\u0161ich pacientov prekonali na\u0161e o\u010dak\u00e1vania. <strong>A\u017e 75% pacientov zaznamenalo zlep\u0161enie zdravotn\u00e9ho stavu, u 52% do\u0161lo k zlep\u0161eniu funkci\u00ed d\u00fdchania, 62% pacientov m\u00e1 \u00fastup chronick\u00e9ho ka\u0161\u013ea, 45% zaznamenalo pokles infekci\u00ed a a\u017e 68% m\u00e1 zlep\u0161enie prospievania a funkci\u00ed tr\u00e1venia. Toto s\u00fa ve\u013emi povzbudiv\u00e9 v\u00fdsledky aj s oh\u013eadom na e\u0161te pomerne kr\u00e1tky \u010das u\u017e\u00edvania lie\u010dby\u201c,<\/strong> dop\u013a\u0148a Peter \u0160tep\u00e1nek.<\/p>\n<p>\u201eKone\u010dne aj ja priber\u00e1m\u201c, \u201eBez lieku by som tu u\u017e nebola\u201c, \u201eMoje bru\u0161ko funguje\u201c, \u201eM\u00f4\u017eem znova \u017ei\u0165\u201c, \u201eCelkovo sa c\u00edtim v\u00fdborne\u201c, \u201e\u017dijem skvel\u00e9 obdobie\u201c, takto znej\u00fa cit\u00e1ty priamo od CF pacientov u\u017e\u00edvaj\u00facich modern\u00fa lie\u010dbu.<\/p>\n<p>Viac v tla\u010dovej spr\u00e1ve tu:&nbsp;<a href=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2021\/04\/TS_MODERN\u00c1-LIE\u010cBA-PRIN\u00c1\u0160A-V\u00ddSLEDKY.pdf\">TS_MODERN\u00c1 LIE\u010cBA PRIN\u00c1\u0160A V\u00ddSLEDKY<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong>PRIP\u00c1JAME TAKTIE\u017d PODPORN\u00dd LIST CF EUROPE k schv\u00e1leniu lieku KAFTRIO&nbsp;<\/strong><\/p>\n<p><a href=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2021\/04\/PODPORN\u00dd-LIST-CF-EUROPE-K-SCHV\u00c1LENIU-LIEKU-KAFTRIO.pdf\">PODPORN\u00dd LIST CF EUROPE K SCHV\u00c1LENIU LIEKU KAFTRIO<\/a>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><strong>V\u00ddSLEDKY PRIESKUMU PACIENTOV S MODERNOU LIE\u010cBOU CF<\/strong><\/p>\n<p><em>Prieskum prebiehal formou online dotazn\u00edka, ktor\u00fd bol zverejnen\u00fd na web str\u00e1nke Klubu CF a Facebookovom profile Klubu Cystickej fibr\u00f3zy. Dotazn\u00edk bol k dispoz\u00edcii po\u010das 10 dn\u00ed \u2013 od 10.2 do 20.2.2021. Dotazn\u00edk bol ur\u010den\u00fd len pacientom s dvoma mut\u00e1ciami delta F508, nez\u00e1visle od toho \u010di u\u017e\u00edvaj\u00fa, alebo neu\u017e\u00edvaj\u00fa Orkambi. Na z\u00e1klade vyzbieran\u00fdch \u00fadajov V\u00e1m predklad\u00e1me nasledovn\u00e9 sk\u00fasenosti pacientov s CF pri lie\u010dbe.&nbsp;<\/em><\/p>\n<p>Podrobn\u00e9 v\u00fdsledky prieskumu n\u00e1jdete tu:&nbsp;<a href=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2021\/04\/PRIESKUM-PACIENTOV-S-MODERNOU-LIE\u010cBOU-CF.pdf\">PRIESKUM PACIENTOV S MODERNOU LIE\u010cBOU CF<\/a><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1708\" src=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2021\/04\/\u00da\u010cINOK-MODERNEJ-LIE\u010cBY-CF-INFORMA\u010cN\u00c1-GRAFIKA-small-size.jpg\" alt=\"\" width=\"17820\" height=\"12600\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>MODERN\u00c1 LIE\u010cBA CYSTICKEJ FIBR\u00d3ZY PRIN\u00c1\u0160A V\u00ddSLEDKY \u201cLie\u010dbu dostala skupina CF pacientov s naj\u0165a\u017e\u0161ou verziou genetickej poruchy. Pristupovali sme preto k lie\u010dbe s ve\u013ekou n\u00e1dejou, ale aj re\u0161pektom,\u201d vrav\u00ed \u010dlen pracovnej skupiny pre modern\u00fa lie\u010dbu CF a otec CF pacienta Ing. Peter \u0160tep\u00e1nek. K lie\u010dbe sa dostalo nie\u010do cez 50 CF pacientov a pribli\u017ene po 6 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1713,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[10],"tags":[],"class_list":["post-1709","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vyskum-a-vyvoj"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>- klubcf.sk<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/klubcf.sk\/index.php\/2021\/04\/19\/1709\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"- klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"MODERN\u00c1 LIE\u010cBA CYSTICKEJ FIBR\u00d3ZY PRIN\u00c1\u0160A V\u00ddSLEDKY \u201cLie\u010dbu dostala skupina CF pacientov s naj\u0165a\u017e\u0161ou verziou genetickej poruchy. 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