{"id":1236609,"date":"2013-05-03T08:42:56","date_gmt":"2013-05-03T05:42:56","guid":{"rendered":"https:\/\/analyse.optim.biz\/?p=1236609"},"modified":"2013-05-03T08:42:56","modified_gmt":"2013-05-03T05:42:56","slug":"campanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara","status":"publish","type":"post","link":"https:\/\/analyse.optim.biz\/?p=1236609","title":{"rendered":"Campanie PRESSALERT.ro \u00ceNVING\u0102TORII Povestea celui mai vechi pacient din Rom\u00e2nia care are o boal\u0103 rar\u0103"},"content":{"rendered":"<article id=\"post-50141\" class=\"post-50141 post type-post status-publish format-standard has-post-thumbnail hentry category-campanii-pressalert category-campanii-invingatorii tag-barbat tag-boala-rara tag-tratament\">\n<div class=\"td-post-header td-pb-padding-side\">\n<div class=\"entry-crumbs\"><span><a title class=\"entry-crumb\" href=\"https:\/\/www.pressalert.ro\/\"><span>Acas\u0103<\/span><\/a><\/span><span><a title=\"Vede\u021bi toate articolele \u00een Campanii PRESSALERT\" class=\"entry-crumb\" href=\"https:\/\/www.pressalert.ro\/category\/campanii-pressalert\/\"><span>Campanii PRESSALERT<\/span><\/a><\/span><span class=\"td-bred-no-url-last\">Campanie PRESSALERT.ro \u00ceNVING\u0102TORII Povestea celui mai vechi pacient din Rom\u00e2nia care are&#8230;<\/span><\/div>\n<ul class=\"td-category\">\n<li class=\"entry-category\"><a href=\"https:\/\/www.pressalert.ro\/category\/campanii-pressalert\/\">Campanii PRESSALERT<\/a><\/li>\n<li class=\"entry-category\"><a href=\"https:\/\/www.pressalert.ro\/category\/campanii-pressalert\/campanii-invingatorii\/\">\u00cenving\u0103torii<\/a><\/li>\n<\/ul>\n<header>\n<h1 class=\"entry-title\">Campanie PRESSALERT.ro \u00ceNVING\u0102TORII Povestea celui mai vechi pacient din Rom\u00e2nia care are o boal\u0103 rar\u0103<\/h1>\n<div class=\"meta-info\">\n<div class=\"td-post-author-name\">\n<div class=\"td-author-by\">De<\/div>\n<p><a href=\"https:\/\/www.pressalert.ro\/author\/adriana-mit\/\">Adriana M\u00ee\u021b<\/a><\/p>\n<div class=\"td-author-line\"> &#8211; <\/div>\n<\/div>\n<p><span class=\"td-post-date\"><time class=\"entry-date updated td-module-date\" datetime=\"2013-05-03T08:42:56+00:00\">mai 3, 2013<\/time><\/span><\/p>\n<div class=\"td-post-comments\"><a href=\"https:\/\/www.pressalert.ro\/2013\/05\/campanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara\/#respond\">0<\/a><\/div>\n<\/div>\n<\/header>\n<\/div>\n<div class=\"td-post-sharing td-post-sharing-top td-pb-padding-side\"><span class=\"td-post-share-title\">DISTRIBUI\u021aI<\/span><\/p>\n<div class=\"td-default-sharing \"><a class=\"td-social-sharing-buttons td-social-facebook\" href=\"http:\/\/www.facebook.com\/sharer.php?u=https%3A%2F%2Fwww.pressalert.ro%2F2013%2F05%2Fcampanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara%2F\"><\/p>\n<div class=\"td-social-but-text\">Facebook<\/div>\n<p><\/a><a class=\"td-social-sharing-buttons td-social-twitter\" href=\"https:\/\/twitter.com\/intent\/tweet?text=Campanie+PRESSALERT.ro+%C3%8ENVING%C4%82TORII+Povestea+celui+mai+vechi+pacient+din+Rom%C3%A2nia+care+are+o+boal%C4%83+rar%C4%83&amp;url=https%3A%2F%2Fwww.pressalert.ro%2F2013%2F05%2Fcampanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara%2F&amp;via=PRESSALERT.ro\"><\/p>\n<div class=\"td-social-but-text\">Twitter<\/div>\n<p><\/a><\/div>\n<\/div>\n<div class=\"td-post-content td-pb-padding-side\">\n<p><a href=\"http:\/\/www.pressalert.ro\/2013\/05\/campanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara\/andreia\/\" rel=\"attachment wp-att-50142\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-50142\" alt=\"andreia\" src=\"http:\/\/www.pressalert.ro\/wp-content\/uploads\/2013\/05\/andreia-640x373.jpg\" width=\"640\" height=\"373\"><\/a><\/p>\n<p>Pr\u0103bu\u015firea regimului comunist a \u00eensemnat libertate, \u00eens\u0103 pentru Andrei Chelaru trecerea la democra\u0163ie a \u00eensemnat o \u015fans\u0103 uria\u015f\u0103 la via\u0163\u0103. Dac\u0103 s-ar fi n\u0103scut cu c\u00e2teva luni \u00eenainte de 1990, Andrei, un t\u00e2n\u0103r de 22 de ani din Timi\u015foara, ar fi avut aceea\u015fi soart\u0103 ca cea a fra\u0163ilor lui mai mari \u2013 moartea. Totul pentru c\u0103 s-a n\u0103scut cu o boal\u0103 genetic\u0103 rar\u0103 despre care medicii din Rom\u00e2nia comunist\u0103 nu \u015ftiau nimic, o boal\u0103 care poate fi controlat\u0103 doar dac\u0103 este descoperit\u0103 la timp. Mama lui Andrei a trecut prin clipe groaznice pentru c\u0103 la o diferen\u0163\u0103 de doi ani a trebuit s\u0103 \u00ee\u015fi \u00eengroape cei doi copii, care de abia \u00eempliniser\u0103 v\u00e2rsta de un an \u015fi nimeni nu \u015ftia s\u0103 \u00eei spun\u0103 ce li s-a \u00eent\u00e2mplat. Tat\u0103l b\u0103iatului este muncitor la o fabric\u0103 din Timi\u015foara, iar mama casnic\u0103. \u00cen anul 1986, \u00een familia Chelaru se na\u015fte primul copil, Romeo. \u00cenc\u0103 de la na\u015ftere b\u0103ie\u0163elul nu se sim\u0163ea bine, de la o simpl\u0103 r\u0103ceal\u0103 f\u0103cea febr\u0103 \u015fi alte complica\u0163ii, iar la un an, p\u0103rin\u0163ii sunt nevoi\u0163i s\u0103 \u00ee\u015fi \u00eengroape copilul. Nimeni nu a \u015ftiut exact care a fost cauza mor\u0163ii, medicii au crezut c\u0103 b\u0103ie\u0163ulul murise pentru c\u0103 avea ro\u015fu \u00een g\u00e2t.<\/p>\n<p>Ca s\u0103-\u015fi aline durerea, la doi ani de la tragedie, se na\u015fte Octavian, care, \u00eens\u0103, moarte \u015fi el la v\u00e2rsta de un an \u015fi jum\u0103tate, tot din motive necunoscute. Mama lui Andrei \u015fi-a revenit cu greu, dup\u0103 ce \u015fi-a v\u0103zut copiii murind, dar a \u00eencercat s\u0103 mearg\u0103 \u00eenainte. \u00cen anul 1990, \u00een familia Chelaru se na\u015fte cel de-al treilea b\u0103iat, p\u0103rin\u0163ii acestuia sperau din tot sufletul ca acesta s\u0103 nu aib\u0103 aceea\u015fi soart\u0103 ca fra\u0163ii lui. Andrei ne poveste\u015fte c\u0103 \u201eeu am avut un mare noroc c\u0103 m-am n\u0103scut imediat dup\u0103 1989 pentru c\u0103 \u00eenainte nu se \u015ftia nimic despre bolile rare, care sunt destul de greu de diagnosticat. Mama \u015fi-a dat seama c\u0103 ceva nu este \u00een regul\u0103 \u015fi imediat dup\u0103 ce m-a n\u0103scut m-a dus la spital ca s\u0103 \u00eemi fac\u0103 toate analizele \u015fi a\u015fa s-a descoperit c\u0103 am o boal\u0103 rar\u0103\u201d.<\/p>\n<p>Mai exact, Andrei sufer\u0103 de boala Bruton, care este genetic\u0103 fiind transmis\u0103 de la mama purt\u0103toare doar b\u0103ie\u0163ilor. Boala debuteaz\u0103 \u00een primele \u015fase luni de via\u0163\u0103 \u015fi f\u0103r\u0103 tratament niciun bolnav nu are cum s\u0103 supravie\u0163uiasc\u0103 pentru c\u0103 de la o simpl\u0103 r\u0103ceal\u0103 se poate ajunge la infec\u0163ii severe.<\/p>\n<p> Andrei avea doar trei luni c\u00e2nd a \u00eenceput s\u0103 ia tratamentul care \u0163ine boala sub control, un tratament costisitor, care se ridic\u0103 la suma de 6.000 de lei lunar, \u00eens\u0103 este asigurat de c\u0103tre statul rom\u00e2n. Andrei ne spune c\u0103 \u00een fiecare lun\u0103, de 21 de ani, trebuie s\u0103 se prezinte la spital, unde, timp de cel pu\u0163in opt ore a\u015fteapt\u0103 s\u0103-i fie administrat tratamentul intravenos. Acest lucru reprezint\u0103 un mare risc pentru t\u00e2n\u0103r pentru c\u0103 intr\u0103 \u00een contact cu persoane care au diferite boli \u015fi se poate infecta mai u\u015for, \u00eens\u0103 niciodat\u0103 nu a ajuns \u00eentr-o stare critic\u0103.<\/p>\n<p>Totu\u015fi, \u00een urm\u0103 cu 15 ani, Andrei era la un pas de moarte pentru c\u0103, timp de c\u00e2teva luni, statul rom\u00e2n a \u00eentrerupt furnizarea tratamentului at\u00e2t de necesar celor cu boli rare. \u201e\u00cen anul 1998 au fost ceva probleme pentru c\u0103 medicamentul de care aveam nevoie nu se g\u0103sea \u00een Rom\u00e2nia. C\u00e2teva luni am fost nevoit s\u0103 \u00eentrerup tratamentul \u015fi noroc cu c\u00e2\u0163iva medici de la Spitalul de Copii \u201eLouis \u0162urcanu\u201d, care au mers p\u00e2n\u0103 \u00een Germania s\u0103 \u00eemi aduc\u0103 tratamentul. Imediat dup\u0103 ce am \u00eentrerupt tratamentul am \u00eenceput s\u0103 m\u0103 simt din ce \u00een ce mai r\u0103u, am f\u0103cut o bron\u015fit\u0103 \u015fi de atunci am probleme cu pl\u0103m\u00e2nii\u201d, ne spune Andrei Chelaru. B\u0103iatul trebuie s\u0103 fie foarte grijuliu, chiar dac\u0103 ia medicamente, pentru c\u0103 este predispus la r\u0103celi sau infec\u0163ii urinare. Ana, mama lui Andrei, \u015fi-a dedicat toat\u0103 via\u0163a cre\u015fterii singurului copil pe care \u00eel are, este casnic\u0103, iar b\u0103iatul ne poveste\u015fte c\u0103 \u201emama a avut toat\u0103 via\u0163a grij\u0103 de mine, cred c\u0103 tot timpul a avut o team\u0103 \u00een suflet c\u0103 a\u015f putea p\u0103\u0163i ceva \u015fi m-ar pierde \u015fi pe mine\u201d. T\u00e2n\u0103rul este, \u00een prezent, student la Facultatea de Psihologie pentru c\u0103 \u015fi-a dorit mereu s\u0103 ajute al\u0163i oameni \u015fi de c\u00e2teva luni a plecat din casa \u00een care a copil\u0103rit \u015fi s-a mutat cu prietena lui.<\/p>\n<p>Mihaela B\u0103t\u0103nean\u0163, medic \u00een cadrul Spitalului de Copii \u201eLouis \u0162urcanu\u201d, ne-a spus c\u0103 potrivit unor statistici realizate \u00een urm\u0103 cu trei ani, \u00een jude\u0163ul Timi\u015f exist\u0103 \u00een jur de 130 de pacien\u0163i diagnostica\u0163i cu boli rare. Cu ajutorul tratamentului decontat de Ministerul S\u0103n\u0103t\u0103\u0163ii, ace\u015ftia pot duce o via\u0163\u0103 normal\u0103 \u015fi se pot integra social, \u00eens\u0103 pentru o parte din ei singura \u015fans\u0103 la via\u0163\u0103 o reprezint\u0103 doar un transplant medular.<\/p>\n<p>\u00a0<\/p>\n<\/div>\n<footer>\n<div class=\"td-post-source-tags td-pb-padding-side\">\n<ul class=\"td-tags td-post-small-box clearfix\">\n<li><span>ETICHETE<\/span><\/li>\n<li><a href=\"https:\/\/www.pressalert.ro\/tag\/barbat\/\">barbat<\/a><\/li>\n<li><a href=\"https:\/\/www.pressalert.ro\/tag\/boala-rara\/\">boala rara<\/a><\/li>\n<li><a href=\"https:\/\/www.pressalert.ro\/tag\/tratament\/\">tratament<\/a><\/li>\n<\/ul>\n<\/div>\n<div class=\"td-post-sharing td-post-sharing-bottom td-pb-padding-side\"><span class=\"td-post-share-title\">DISTRIBUI\u021aI<\/span><\/p>\n<div class=\"td-default-sharing \"><a class=\"td-social-sharing-buttons td-social-facebook\" href=\"http:\/\/www.facebook.com\/sharer.php?u=https%3A%2F%2Fwww.pressalert.ro%2F2013%2F05%2Fcampanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara%2F\"><\/p>\n<div class=\"td-social-but-text\">Facebook<\/div>\n<p><\/a><a class=\"td-social-sharing-buttons td-social-twitter\" href=\"https:\/\/twitter.com\/intent\/tweet?text=Campanie+PRESSALERT.ro+%C3%8ENVING%C4%82TORII+Povestea+celui+mai+vechi+pacient+din+Rom%C3%A2nia+care+are+o+boal%C4%83+rar%C4%83&amp;url=https%3A%2F%2Fwww.pressalert.ro%2F2013%2F05%2Fcampanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara%2F&amp;via=PRESSALERT.ro\"><\/p>\n<div class=\"td-social-but-text\">Twitter<\/div>\n<p><\/a><\/div>\n<\/div>\n<div class=\"td-block-row td-post-next-prev\">\n<div class=\"td-block-span6 td-post-prev-post\">\n<div class=\"td-post-next-prev-content\"><span>Articolul precedent<\/span><a href=\"https:\/\/www.pressalert.ro\/2013\/05\/doua-apartamente-distruse-si-un-barbat-ranit-dupa-o-explozie\/\">Dou\u0103 apartamente distruse \u015fi un b\u0103rbat r\u0103nit dup\u0103 o explozie<\/a><\/div>\n<\/div>\n<div class=\"td-block-span6 td-post-next-post\">\n<div class=\"td-post-next-prev-content\"><span>Articolul urm\u0103tor<\/span><a href=\"https:\/\/www.pressalert.ro\/2013\/05\/soferul-audi-ului-q7-care-a-provocat-accidentul-de-la-intrarea-in-giarmata-dosar-penal-vezi-video-cu-interventia-pompierilor\/\">\u0218oferul Audi-ului Q7 care a provocat accidentul de la intrarea \u00een Giarmata, dosar penal. Vezi VIDEO cu interven\u021bia pompierilor<\/a><\/div>\n<\/div>\n<\/div>\n<div class=\"author-box-wrap\"><a href=\"https:\/\/www.pressalert.ro\/author\/adriana-mit\/\"><img loading=\"lazy\" decoding=\"async\" alt src=\"https:\/\/secure.gravatar.com\/avatar\/b1f9b7c06ee21da21325bdc897b6b37a?s=96&amp;d=mm&amp;r=g\" class=\"avatar avatar-96 photo\" height=\"96\" width=\"96\"><\/a><\/p>\n<div class=\"desc\">\n<div class=\"td-author-name vcard author\"><span class=\"fn\"><a href=\"https:\/\/www.pressalert.ro\/author\/adriana-mit\/\">Adriana M\u00ee\u021b<\/a><\/span><\/div>\n<div class=\"td-author-url\"><a href=\"http:\/\/www.pressalert.ro\">http:\/\/www.pressalert.ro<\/a><\/div>\n<\/div>\n<\/div>\n<p><span><\/span><span><span><\/span><\/span><span><\/span><\/footer>\n<\/article>\n<p> Source URL: https:\/\/www.pressalert.ro\/2013\/05\/campanie-pressalert-ro-invingatorii-povestea-celui-mai-vechi-pacient-din-romania-care-are-o-boala-rara\/<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Acas\u0103Campanii PRESSALERTCampanie PRESSALERT.ro \u00ceNVING\u0102TORII Povestea celui mai vechi pacient din Rom\u00e2nia care are&#8230; Campanii PRESSALERT \u00cenving\u0103torii Campanie PRESSALERT.ro \u00ceNVING\u0102TORII Povestea celui mai vechi pacient din Rom\u00e2nia care are o boal\u0103 rar\u0103 De Adriana M\u00ee\u021b &#8211; mai 3, 2013 0 DISTRIBUI\u021aI Facebook Twitter Pr\u0103bu\u015firea regimului comunist a \u00eensemnat libertate, \u00eens\u0103 pentru Andrei Chelaru trecerea la democra\u0163ie [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[89],"tags":[176],"class_list":["post-1236609","post","type-post","status-publish","format-standard","hentry","category-romania","tag-pressalert-ro"],"_links":{"self":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/posts\/1236609","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1236609"}],"version-history":[{"count":0,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/posts\/1236609\/revisions"}],"wp:attachment":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1236609"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1236609"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1236609"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}