{"id":765,"date":"2006-07-17T15:52:48","date_gmt":"2006-07-17T13:52:48","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/necakana-milost-2\/200607"},"modified":"2014-02-09T16:39:26","modified_gmt":"2014-02-09T15:39:26","slug":"necakana-milost-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/necakana-milost-2\/765","title":{"rendered":"Ne\u010dakan\u00e1 milos\u0165"},"content":{"rendered":"<p>Tiffany mala 6 mesiacov ke\u010f jej diagnostikovali cystick\u00fa fibr\u00f3zu. To bolo v roku 1972 a vtedy lek\u00e1ri povedali jej mame \u017ee sa nebude hra\u0165 s b\u00e1bikami, preto\u017ee zomrie sk\u00f4r ako bude m\u00f4c\u0165 osl\u00e1vi\u0165 svoje piate narodeniny a jej matersk\u00e9 city k nej nebud\u00fa nikdy m\u00f4c\u0165 by\u0165 naplnen\u00e9.<\/p>\n<p><span class=\"text\">Ale medzi\u010dasom mala Tiffany 5, pri\u0161la nov\u00e1 lie\u010dba, a lek\u00e1ri jej pris\u013e\u00fabili o p\u00e1r rokov viac. Po prv\u00fd kr\u00e1t nastala \u00fa\u013eava, ako medic\u00edna i\u0161la krok po kroku vpred pred dospievaj\u00facim diev\u010da\u0165om. O 10 ro\u010dnej Tiffany lek\u00e1ri u\u017e povedali \u017ee zomrie ako adolescentka a v 18 sa vzdala sna prihl\u00e1si\u0165 sa na univerzitu preto\u017ee ner\u00e1tala s t\u00fdm \u017ee by sa mohla do\u017ei\u0165 prom\u00f3cie. \u201cNepam\u00e4t\u00e1m sa \u017ee by mi niekedy niekto nehovoril \u017ee v bl\u00edzkej dobe zomriem\u201d, hovor\u00ed dnes 33-ro\u010dn\u00e1 Tiffany \u017eij\u00faca v Bradentone na Floride so svojim man\u017eelom Johnom Reidom a ich troma de\u0165mi. \u201cAle som d\u00f4kazom toho \u017ee sa m\u00fdlia\u201d.<\/span><\/p>\n<p>V tridsiatych rokoch minul\u00e9ho storo\u010dia, ke\u010f boli op\u00edsan\u00e9 a diagnostikovan\u00e9 prv\u00e9 pr\u00edpady cystickej fibr\u00f3zy sa 80 percent pacientov nedo\u017eilo prv\u00e9ho roku \u017eivota. Hust\u00fd hlien upch\u00e1val ich p\u013e\u00faca a tr\u00e1viaci syst\u00e9m. Ale v posledn\u00fdch dvoch desa\u0165ro\u010diach nov\u00e9 terapeutick\u00e9 pr\u00edstupy pred\u013a\u017eili priemern\u00fd vek do\u017eitia z mesiacov na roky a z rokov na desa\u0165ro\u010dia. Cystick\u00e1 fibr\u00f3za je na\u010falej naj\u010dastej\u0161ie smrte\u013en\u00e1 geneticky podmienen\u00e9 ochorenie v Amerike ktor\u00fdm trp\u00ed 30\u00a0000 \u013eud\u00ed, z ktor\u00fdch ale v\u00e4\u010d\u0161ina sa dostane cez hranicu 35 rokov a so \u0161\u0165ast\u00edm sa viacer\u00fd do\u017eij\u00fa staroby. Dnes m\u00e1 viac ako 40 percent pacientov 18 rokov a viac, nov\u00e1 gener\u00e1cia \u010del\u00ed nov\u00fdm v\u00fdzvam \u2013 medic\u00ednskym a emocion\u00e1lnym \u2013 v dospelosti o ktorej ned\u00fafali \u017ee ju uvidia.<\/p>\n<p>Dar nov\u00e9ho \u017eivota prich\u00e1dzal po \u010dastiach. Nebol v\u00fdsledkom jedin\u00e9ho prielomu ale pr\u00fadu men\u0161\u00edch inov\u00e1ci\u00ed. Pacienti teraz zabr\u00e1nia infekcii paletou rozli\u010dn\u00fdch typov lie\u010dby: inhal\u00e1ciou \u00fa\u010dinn\u00fdch antibiot\u00edk dodan\u00fdch priamo do p\u013e\u00fac, fyzioterapiou, enz\u00fdmami prid\u00e1van\u00fdmi k\u00a0jedlu na podporu funkcie tr\u00e1venia. \u201cJe to skuto\u010dne success story aj ke\u010f mus\u00edme st\u00e1le rie\u0161i\u0165 z\u00e1sadn\u00e9 veci\u201c hovor\u00ed Dr. Bruce Marshall, viceprezident nad\u00e1cie Cystic Fibrosis Foundation. Napriek v\u00fdvoju nov\u00fdch terapii ktor\u00e9 cielene \u00fa\u010dinkuj\u00fa na chorobu sp\u00f4sobuj\u00facu kombin\u00e1ciu dvoch CF mutovan\u00fdch g\u00e9nov (pri\u010dom jednu k\u00f3piu CF mutovan\u00e9ho g\u00e9nu, \u010do je ne\u0161kodn\u00e9, m\u00e1 viac ako 10 mili\u00f3nov Ameri\u010danov) vedci nepredpokladaj\u00fa v\u00a0bl\u00edzkej dobe rozhoduj\u00face v\u00ed\u0165azstvo.<\/p>\n<p>Lek\u00e1ri \u010dasto neboli schopn\u00fd dostato\u010dne r\u00fdchlo si uvedomi\u0165 d\u00f4sledky svojich \u00faspechov. Doned\u00e1vna boli 30-ro\u010dn\u00fd pacienti st\u00e1le lie\u010den\u00fd na pediatrick\u00fdch oddeleniach. V\u0161etko sa men\u00ed ke\u010f sa teraz otv\u00e1raj\u00fa desiatky nov\u00fdch centier pre dospel\u00fdch ale roky stagn\u00e1cie zanech\u00e1vaj\u00fa svoj tie\u0148. Hovor\u00ed Dr. Mike Knowles, koordin\u00e1tor centra pre dospel\u00fdch pri University of North Carolina \u201cTieto centr\u00e1 vychovali straten\u00fdch pacientov, neboli lie\u010den\u00fd s\u00a0t\u00fdm \u017ee ich \u010dak\u00e1 bud\u00facnos\u0165 a\u00a0nedali im pr\u00edle\u017eitos\u0165 prebra\u0165 vlastn\u00fa zodpovednos\u0165 vyrasta\u0165 do ich zrelej mladej dospelosti\u201c<\/p>\n<p>David Trester, 32 ro\u010dn\u00fd obsluhova\u010d strojov z\u00a0Winony v Minnesote, obvi\u0148uje cystick\u00fa fibr\u00f3zu za jeho mlados\u0165 str\u00e1ven\u00fa pit\u00edm, bitkami a\u00a0brakovan\u00edm kreditn\u00fdch kariet ke\u010f d\u00fafal \u017ee dlhy nebude musie\u0165 nikdy spl\u00e1ca\u0165. \u201cBol to pre m\u0148a r\u00fdchly \u017eivot\u201c hovor\u00ed. \u201cNepredpokladal som \u017ee budem \u017ei\u0165, us\u00fadil som, pre\u010do si nevyrazi\u0165 a u\u017ei\u0165 ka\u017ed\u00fa min\u00fatu\u00a0?\u201c To sa zmenilo a\u017e ke\u010f sa od lek\u00e1rov dozvedel o\u00a0nov\u00fdch \u00fa\u010dinn\u00fdch liekoch, ktor\u00e9 m\u00f4\u017eu o\u00a0desa\u0165ro\u010dia pred\u013a\u017ei\u0165 jeho \u017eivot, ak ho sk\u00f4r nezabije jeho z\u00e1\u013euba v\u00a0alkoholizme a\u00a0cigaret\u00e1ch. \u201cA\u017e ke\u010f som sa bl\u00ed\u017eil k\u00a0tridsiatke, zistil som, to sn\u00e1\u010f ani nie je pravda, ja m\u00f4\u017eem \u017ei\u0165\u201c hovor\u00ed dnes Trester ktor\u00fd zanechal alkohol a \u010dak\u00e1 so svojou man\u017eelkou prv\u00e9 die\u0165a. \u201cZaumienil som si napravi\u0165 svoje omyly\u201c<\/p>\n<p>Nadch\u00fdnaj\u00faci sa \u017eivotom v\u00a0dospelosti, m\u00e1 st\u00e1le viac a\u00a0viac \u013eud\u00ed s CF vlastn\u00e9 rodiny, aj ke\u010f cesta k\u00a0rodi\u010dovstvu nie je v\u017edy \u013eahk\u00e1. Niektor\u00fd mu\u017ei s\u00a0CF s\u00fa schopn\u00fd ma\u0165 deti aj bez chirurgick\u00e9ho z\u00e1kroku, mnoh\u00fdm ale ani nepovedali \u017ee s\u00fa bez neho neplodn\u00fd. \u017deny s\u00a0CF naproti tomu m\u00f4\u017eu otehotnie\u0165 bez v\u00e4\u010d\u0161\u00edch probl\u00e9mov, napriek predpovediam niektor\u00fdch lek\u00e1rov \u017ee ochorenie sp\u00f4sob\u00ed ich neplodnos\u0165. Zo za\u010diatku neboli \u013eudia ani dostato\u010dne informovan\u00fd \u010di m\u00f4\u017eu prenies\u0165 CF na svoje deti. Dnes lek\u00e1ri vedia \u017ee pokia\u013e nemaj\u00fa obaja partneri mut\u00e1ciu v CF g\u00e9ne je to nemo\u017en\u00e9. Genetick\u00e9 testovanie sa stalo v\u00a0poslednom desa\u0165ro\u010d\u00ed v\u0161eobecne dostupn\u00e9.<\/p>\n<p>Genetick\u00e9 testovanie mo\u017eno prinieslo trochu istoty, ale potenci\u00e1lny rodi\u010dia maj\u00fa st\u00e1le pred sebou ne\u013eahk\u00fa dilemu. Napriek medic\u00ednskym pokrokom, cystick\u00e1 fibr\u00f3za zost\u00e1va smrte\u013en\u00fdm ochoren\u00edm, a\u00a0lek\u00e1ri \u010dasto pripom\u00ednaj\u00fa pacientom \u017ee sa nemusia te\u0161i\u0165 z\u00a0toho ako ich deti vyrastaj\u00fa. Tehotenstvo a\u00a0bezsenn\u00e9 noci m\u00f4\u017eu prispie\u0165 k\u00a0\u010fal\u0161iemu zhor\u0161eniu pacientovho zdravia, vystavenie chr\u00edpke zo \u0161koly ktor\u00fa nav\u0161tevuj\u00fa jeho deti spusti\u0165 \u017eivot ohrozuj\u00facu infekciu v\u00a0zni\u010den\u00fdch p\u013e\u00facach.<\/p>\n<p><span class=\"text\">\u201cZ toho v\u0161etk\u00e9ho, otehotnie\u0165 je naj\u013eah\u0161ie\u201c, hovor\u00ed Dr. Michael Boyle, ktor\u00fd vedie CF program pre dospel\u00fdch pri nemocnici Johna Hopkinsa \u201cAle na\u0161ou \u00falohou je aby pacienti vedeli zvl\u00e1dnu\u0165 dlh\u0161ie obdobie ako dev\u00e4\u0165 mesiacov\u201c.<\/span><\/p>\n<p>Pre t\u00fdch \u010do sa rozhodn\u00fa ma\u0165 deti, rodi\u010dovstvo m\u00f4\u017ee by\u0165 tak hlboko napl\u0148uj\u00face ako aj s horko sladkou pr\u00edchu\u0165ou. Stacy Danko, 40 ro\u010dn\u00e1 matka troch det\u00ed z\u00a0Baltimoru nikdy neo\u013eutovala svoje rozhodnutie. St\u00e1le je to zlo\u017eit\u00e9, vidie\u0165 jej 14, 10 a\u00a07 ro\u010dn\u00e9 deti ktor\u00e9 sa bud\u00fa musie\u0165 zmieri\u0165 s\u00a0t\u00fdm \u017ee ich mama umrie sk\u00f4r ako by mala. \u201cVid\u00edm ich \u00fazkos\u0165 a\u00a0som z\u00a0toho ne\u0161\u0165astn\u00e1, moje deti bud\u00fa rovnako ako ja trpie\u0165\u201c. A nau\u010di\u0165 sa s\u00a0t\u00fdm \u017ei\u0165 je zo v\u0161etk\u00e9ho naj\u0165a\u017e\u0161ie.<\/p>\n<p>&nbsp;<\/p>\n<p><em>Ben Whitford, Newsweek, 12. September 2005<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Tiffany mala 6 mesiacov ke&#271; jej diagnostikovali cystick&uacute; fibr&oacute;zu. To bolo v roku 1972 a vtedy lek&aacute;ri povedali jej mame &#382;e sa nebude hra&#357; s b&aacute;bikami, preto&#382;e zomrie sk&ocirc;r ako bude m&ocirc;c&#357; osl&aacute;vi&#357; svoje piate narodeniny a jej matersk&eacute; city &hellip; <a href=\"https:\/\/slanedeti.sk\/cms\/necakana-milost-2\/765\">Continued<\/a><\/p>\n","protected":false},"author":7,"featured_media":1600,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[250],"tags":[],"class_list":["post-765","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zivot-s-cystickou-fibrozou"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ne\u010dakan\u00e1 milos\u0165 - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"Tiffany mala 6 mesiacov ke\u010f jej diagnostikovali cystick\u00fa fibr\u00f3zu. 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