{"id":31985,"date":"2017-05-26T14:40:36","date_gmt":"2017-05-26T12:40:36","guid":{"rendered":"http:\/\/sdk.mk\/?p=31985"},"modified":"2017-05-26T14:40:36","modified_gmt":"2017-05-26T12:40:36","slug":"femijet-e-semure-nga-fibroza-cistike-kerkojne-qe-qeveria-e-zaevit-t-ua-ktheje-te-drejten-e-jetes","status":"publish","type":"post","link":"https:\/\/sdk.mk\/index.php\/histori-te-parrefyera\/femijet-e-semure-nga-fibroza-cistike-kerkojne-qe-qeveria-e-zaevit-t-ua-ktheje-te-drejten-e-jetes\/","title":{"rendered":"F\u00cbMIJ\u00cbT E S\u00cbMUR\u00cb NGA FIBROZA CISTIKE K\u00cbRKOJN\u00cb Q\u00cb QEVERIA E ZAEVIT T\u2019UA KTHEJ\u00cb T\u00cb DREJT\u00cbN E JET\u00cbS"},"content":{"rendered":"<div class=\"f52428582a4b906b2d2e2a7d733c7d27\" data-index=\"7\" style=\"float: none; margin:10px 0 10px 0; text-align:center;\">\n<!-- MSP Ads Asynchronous JS Tag - Generated with Revive Adserver v5.4.1 -->\r\n<ins data-revive-zoneid=\"167\" data-revive-id=\"060fdb01f6430ec164d3519234aa4967\"><\/ins>\r\n<script async src=\"\/\/panel.ads.com.mk\/www\/delivery\/asyncjs.php\"><\/script>\n<\/div>\n<p>Tre probleme t\u00eb m\u00ebdha t\u00eb familjeve t\u00eb f\u00ebmij\u00ebve dhe t\u00eb rinjve t\u00eb s\u00ebmur\u00eb nga fibroza cistike (FC) n\u00eb Maqedoni i sjellin jet\u00ebt e tyre n\u00eb rrezik n\u00eb \u00e7do moment, \u00e7do dit\u00eb, dhe nuk u lejojn\u00eb q\u00eb t\u2019iu zgjatet jet\u00ebgjat\u00ebsia si n\u00eb shtetet e tjera. N\u00eb Kanada, Franc\u00eb dhe n\u00eb shum\u00eb shtete t\u00eb tjera, jet\u00ebgjat\u00ebsia mesatare e t\u00eb s\u00ebmur\u00ebve nga FC \u00ebsht\u00eb tashm\u00eb e barabart\u00eb me jet\u00ebgjat\u00ebsin\u00eb mesatare t\u00eb njer\u00ebzve t\u00eb sh\u00ebndosh\u00eb. Ata jetojn\u00eb normalisht, m\u00ebsojn\u00eb, studiojn\u00eb, martohen dhe lindin f\u00ebmij\u00eb, disa prej tyre jan\u00eb sportist\u00eb, kurse vet\u00ebm tek ne, p\u00ebr shkak t\u00eb k\u00ebsaj politike t\u00eb keqe sh\u00ebndet\u00ebsore dhe sjelljeje neglizhente e qeveris\u00eb, ata jetojn\u00eb vet\u00ebm 12 vjet.<\/p>\n<p>T\u00eb s\u00ebmur\u00ebt prej s\u00ebmundjeve t\u00eb rralla, mes s\u00eb cil\u00ebve \u00ebsht\u00eb edhe kategoria e tyre, jan\u00eb n\u00eb programin e re qeveritar t\u00eb LSDM-s\u00eb, e cila premton kthim t\u00eb Buxhetit t\u00eb 80 milion\u00eb eurove, t\u00eb cilat iu nd\u00ebrpren\u00eb nga ana e qeverive t\u00eb Emill Dimitrievit dhe Nikolla Gruevskit si dhe ndryshim t\u00eb rregulativ\u00ebs p\u00ebr t\u00eb s\u00ebmur\u00ebt nga FC.<br \/>\n\u201c\u201eKemi dy probleme t\u00eb m\u00ebdha n\u00eb luft\u00ebn p\u00ebr jet\u00eb t\u00eb f\u00ebmij\u00ebve tan\u00eb t\u00eb s\u00ebmur\u00eb nga fibroza cistike. S\u00eb pari, nuk kemi qasje p\u00ebr tek ila\u00e7et bazore p\u00ebr terapi simptomatologjike, t\u00eb cilat i sh\u00ebrojn\u00eb pasojat. S\u00eb dyti, nuk kemi qasje deri tek t\u00eb ashtuquajturat ila\u00e7e \u201cjetim\u00eb\u201d, mbase m\u00eb t\u00eb r\u00ebnd\u00ebsishmit n\u00eb parandalimin e nd\u00ebrlikimeve. Dhe s\u00eb treti, nj\u00eb problem i madh \u00ebsht\u00eb fakti q\u00eb Qendra p\u00ebr t\u00eb s\u00ebmur\u00ebt nga fibroza cistike pas 28 vjet\u00ebsh u b\u00eb n\u00eb klinik\u00ebn e Kozles, por akoma dhe pas nj\u00eb viti q\u00eb kur i transferuam pacient\u00ebt nga Klinika e f\u00ebmij\u00ebve te kjo qend\u00ebr, nuk na jan\u00eb b\u00ebr\u00eb t\u00eb qasshme historit\u00eb e mjekimit. Lejohet vet\u00ebm kopje e historive , por n\u00eb Klinik\u00ebn e f\u00ebmij\u00ebve jepen kopje jo t\u00eb t\u00eb gjith\u00eb historis\u00eb s\u00eb pacientit, por vet\u00ebm pjes\u00ebrisht, t\u00eb disa rezultateve nga analizat e atjeshme\u201d, thot\u00eb Snezhava Boja\u00e7in, kryetare e Shoqat\u00ebs p\u00ebr fibroz\u00eb cistike.<br \/>\n\u201cK\u00ebt\u00eb gj\u00eb q\u00eb e b\u00ebn Klinika e f\u00ebmij\u00ebve \u00ebsht\u00eb shum\u00eb e r\u00ebnd\u00ebsishme. Jet\u00ebt e f\u00ebmij\u00ebve tan\u00eb jan\u00eb n\u00ebn pron\u00ebsin\u00eb e saj\u201d, thot\u00eb Boja\u00e7in.<\/p>\n<p>N\u00eb historin\u00eb e \u00e7do pacienti, thot\u00eb ajo, ka t\u00eb dh\u00ebna mes tjerash edhe p\u00ebr reagimet alergjike prej ila\u00e7eve. Qendra n\u00eb Kozle, duke mos i pasur dosjet e pacient\u00ebve, vihet n\u00eb rrezik kur vendos p\u00ebr terapin\u00eb e pacientit. Mjek\u00ebve u nevojiten informatat e kaluara, sidomos kur duhet ndryshuar terapin\u00eb e pacient\u00ebve me FC.<\/p>\n<p>Boj\u00e7in i tregon padit\u00eb kund\u00ebr Klinik\u00ebs p\u00ebr s\u00ebmundje t\u00eb f\u00ebmij\u00ebve \u2013 Shkup dhe kund\u00ebr drejtoresh\u00ebs Aspazija Sofijanova, nga prind\u00ebrit q\u00eb nuk kan\u00eb arritur t\u00eb marrin kopje t\u00eb t\u00ebr\u00ebsishme t\u00eb historive. K\u00ebtyre njer\u00ebzve, si\u00e7 thuhet n\u00eb padi, u \u00ebsht\u00eb lejuar t\u00eb b\u00ebjn\u00eb vet\u00ebm k\u00ebqyrje. Kopjet e historive mjek\u00ebsore ata do t\u2019i k\u00ebrkojn\u00eb gjyq\u00ebsisht, pasi thon\u00eb, nuk jan\u00eb ata mjek\u00eb q\u00eb t\u00eb mund t\u00eb b\u00ebjn\u00eb k\u00ebqyrje t\u00eb dosjeve t\u00eb f\u00ebmij\u00ebve t\u00eb tyre. P\u00ebr faktin q\u00eb Qendra p\u00ebr f\u00ebmij\u00ebt me fibroz\u00eb cistike punon pa historit\u00eb mjek\u00ebsore t\u00eb 40 pacient\u00ebve, v\u00ebrteton edhe drejtori i Insititutit p\u00ebr s\u00ebmundje t\u00eb mushk\u00ebrive tek f\u00ebmij\u00ebt n\u00eb Kozle, Oliver Zafirovski. Por, Sofijanova mohon dhe thot\u00eb q\u00eb dyert p\u00ebr marrje t\u00eb ila\u00e7eve familjet i kan\u00eb t\u00eb hapura kurdo, p\u00ebr 300 denar\u00eb t\u00eb b\u00ebjn\u00eb kopje, si\u00e7 \u00ebsht\u00eb detyrim ligjor i Klinik\u00ebs p\u00ebr f\u00ebmij\u00eb t\u00eb ruaj\u00eb origjinalin e historive mjek\u00ebsore t\u00eb t\u00eb gjith\u00eb pacient\u00ebve.<\/p>\n<p>Ila\u00e7et p\u00ebr t\u00eb s\u00ebmur\u00ebt nga fibroza cistike nuk jan\u00eb ila\u00e7e q\u00eb mund t\u00eb blihen n\u00eb shitje t\u00eb lir\u00eb dhe p\u00ebr k\u00ebt\u00eb arsye ekziston programi p\u00ebr s\u00ebmundje t\u00eb rralla. Shoqata k\u00ebrkon q\u00eb mjekimet urgjentisht t\u00eb futen n\u00eb Program. N\u00eb t\u00eb, tani gjenden vet\u00ebm pulmozini, kolistini dhe tobramicini, t\u00eb cil\u00ebt jan\u00eb antibiotik\u00eb, dhe nuk jan\u00eb ila\u00e7e p\u00ebr FC, por p\u00ebr bakterie, thot\u00eb Boja\u00e7in. Na i japin vet\u00ebm sa p\u00ebr t\u00eb th\u00ebn\u00eb, ja keni ila\u00e7e, thot\u00eb ajo.<br \/>\nKefsere Emin \u00ebsht\u00eb n\u00ebn\u00eb e nj\u00eb vajze 6-vje\u00e7are e s\u00ebmur\u00eb nga fiborza cistike. P\u00ebr dit\u00eb ajo ose i shoqi, i cili \u00ebsht\u00eb dashur t\u00eb heq\u00eb dor\u00eb nga puna q\u00eb t\u00eb mund ta sh\u00ebrojn\u00eb f\u00ebmij\u00ebn, n\u00eb sht\u00ebpi i b\u00ebjn\u00eb inhalacion q\u00eb ta mbajn\u00eb n\u00eb gjendje t\u00eb mir\u00eb, q\u00eb t\u00eb mund t\u00eb shkoj\u00eb n\u00eb shkoll\u00eb. N\u00ebse ndodh infeksion, thot\u00eb Kefsere Emin, vajza merr pulmozin dhe ventolin.<\/p>\n<p>\u201c\u00c7do pacient \u00ebsht\u00eb ndryshe. Ndonj\u00eb f\u00ebmij\u00eb ka m\u00eb tep\u00ebr probleme me mushk\u00ebrit\u00eb e bardha. Pastaj, edhe bakteriet dallojn\u00eb. Te vajza ime jan\u00eb zaptuar mushk\u00ebrit\u00eb e bardha, pankreasi dhe zorr\u00ebt. N\u00ebp\u00ebrmjet Programit duhet t\u00eb p\u00ebrfshihen ila\u00e7et m\u00eb t\u00eb reja \u201ckalideko jetim\u00eb\u201d dhe \u201corkampi\u201d, M\u00eb urgjentisht duhet t\u00eb blihen edhe gjeneratat e reja t\u00eb ila\u00e7eve p\u00ebr terapi simptomatologjike dhe t\u00eb hiqen nga p\u00ebrdorimi antibiotik\u00ebt e vjet\u00ebr t\u00eb padobish\u00ebm. Ne k\u00ebrkojm\u00eb ose t\u00eb futen me importim me nd\u00ebrhyrje ose t\u00eb vendosen n\u00eb list\u00ebn pozitive t\u00eb Fondit t\u00eb sh\u00ebndet\u00ebsis\u00eb\u201d, apelon Emin.<br \/>\nAjo thot\u00eb se familja \u00ebsht\u00eb shum\u00eb keq financiarisht. \u00c7do muaj p\u00ebr antibiotik\u00eb dhe p\u00ebr multivitamina t\u00eb cilat jan\u00eb t\u00eb detyrueshme q\u00eb k\u00ebta f\u00ebmij\u00eb t\u00eb jetojn\u00eb, ata paguajn\u00eb nga 500 euro. Plus, vet\u00eb b\u00ebjn\u00eb shprica dhe mjete t\u00eb tjera bazore p\u00ebr inhalacion dhe p\u00ebr trajtimin q\u00eb e b\u00ebjn\u00eb n\u00eb sht\u00ebpi. Ata nuk arrijn\u00eb t\u00eb mbulojn\u00eb as harxhimet e ushqimit, thot\u00eb ajo. T\u00eb s\u00ebmur\u00ebt prej FC, q\u00eb t\u00eb mund t\u00eb mbijetojn\u00eb duhet t\u00eb konsumojn\u00eb 30-50 p\u00ebrqind m\u00eb shum\u00eb ushqim n\u00eb dit\u00eb se sa nj\u00eb njeri i zakonsh\u00ebm. Koha p\u00ebr ta \u00ebsht\u00eb poashtu nj\u00eb problem, pes\u00eb her\u00eb n\u00eb dit\u00eb duhet lar\u00eb inhalatori, vazhdimisht p\u00ebrgatitet ushqim p\u00ebr ta. Apelojn\u00eb q\u00eb shteti t\u2019u ndihmoj\u00eb s\u00eb paku me nj\u00eb terapi t\u00eb duhur dhe trajtim mjek\u00ebsor, t\u00eb cilin deri tani nuk kan\u00eb arritur ta ken\u00eb.<\/p>\n<p>Deputetja Jagoda Shahpaska nga LSDM e cila \u00ebsht\u00eb kryetare e komisionit t\u00eb sh\u00ebndet\u00ebsis\u00eb n\u00eb parti dhe e cila me nd\u00ebrhyrje t\u00eb amandamenteve disa her\u00eb pa suksese \u00ebsht\u00eb p\u00ebrpjekur q\u00eb n\u00eb Parlamentin e kaluar t\u2019i kthej\u00eb n\u00eb buxhet mjetet t\u00eb cilat vazhdimisht ua merrnin t\u00eb s\u00ebmur\u00ebve nga s\u00ebmundje t\u00eb rralla, premton: \u201cMe formimin e qeveris\u00eb s\u00eb re do t\u00eb ket\u00eb revizion dhe reforma n\u00eb rregulativat q\u00eb do t\u00eb p\u00ebrfshijn\u00eb s\u00ebmundjet e rralla, mes t\u00eb cilave jan\u00eb edhe t\u00eb s\u00ebmur\u00ebt nga fibroza cistike. Ai proces do t\u00eb zhvillohet n\u00eb konsultim me prind\u00ebrit dhe familjet t\u00eb k\u00ebtyre t\u00eb s\u00ebmur\u00ebve, nd\u00ebrsa do t\u00eb p\u00ebrdoret p\u00ebrvoja e regjionit dhe t\u00eb shteteve evropiane. Mjekimi i k\u00ebsaj s\u00ebmundjeje, e cila \u00ebsht\u00eb e rrall\u00eb, por edhe fatale, \u00ebsht\u00eb shum\u00eb e shtrenjt\u00eb, nd\u00ebrsa Maqedonia \u00ebsht\u00eb shtet i varf\u00ebr. Por, do t\u00eb b\u00ebjm\u00eb gjith\u00e7ka q\u00eb t\u00eb s\u00ebmur\u00ebt nga FC dhe t\u00eb tjer\u00ebt t\u00eb s\u00ebmur\u00eb t\u00eb mos i l\u00ebn\u00eb n\u00eb balt\u00eb dhe t\u00eb vet\u00ebm si deri m\u00eb tani dhe t\u2019ua leht\u00ebsojm\u00eb dhe p\u00ebrmir\u00ebsojm\u00eb jet\u00ebn sa t\u00eb mundemi k\u00ebtyre bashk\u00ebqytetasve tan\u00eb\u201d.<\/p>\n<p><em><strong>S.K. DELEVSKA<\/strong><\/em><\/p>\n\n<div style=\"font-size: 0px; height: 0px; line-height: 0px; margin: 0; padding: 0; clear: both;\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Tre probleme t\u00eb m\u00ebdha t\u00eb familjeve t\u00eb f\u00ebmij\u00ebve dhe t\u00eb rinjve t\u00eb s\u00ebmur\u00eb nga fibroza cistike (FC) n\u00eb Maqedoni i [&hellip;]<\/p>\n","protected":false},"author":9,"featured_media":31909,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_mo_disable_npp":"","inline_featured_image":false},"categories":[3085],"tags":[],"imageURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2017\/05\/snezhana-bojchin-650x412.jpg","thumbURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2017\/05\/snezhana-bojchin-250x158.jpg","categoryNames":["Histori t\u00eb parr\u00ebfyera"],"feature_caption":"\r\n\u201eKemi dy probleme t\u00eb m\u00ebdha n\u00eb luft\u00ebn p\u00ebr jet\u00eb t\u00eb f\u00ebmij\u00ebve tan\u00eb t\u00eb s\u00ebmur\u00eb nga fibroza cistike. S\u00eb pari, nuk kemi qasje p\u00ebr tek ila\u00e7et bazore p\u00ebr terapi simptomatologjike, t\u00eb cilat i sh\u00ebrojn\u00eb pasojat. S\u00eb dyti, nuk kemi qasje deri tek t\u00eb ashtuquajturat ila\u00e7e \u201cjetim\u00eb\u201d, mbase m\u00eb t\u00eb r\u00ebnd\u00ebsishmit n\u00eb parandalimin e nd\u00ebrlikimeve. Dhe s\u00eb treti, n\u00eb Qendr\u00ebn e t\u00eb s\u00ebmur\u00ebve nga fibroza cistike, nuk kemi qasje p\u00ebr tek historia e mjekimeve, t\u00eb cilat i ruan Klinika p\u00ebr f\u00ebmij\u00eb.\u201d, thot\u00eb Snezhana Boj\u00e7in, kryetare e Shoqat\u00ebs s\u00eb fibroz\u00ebs cistike (Foto: SDK.MK).","subtitle":"","views":"9139","source":"Shkup, (SAKAMDAKAZAM.MK)","yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v15.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>F\u00cbMIJ\u00cbT E S\u00cbMUR\u00cb NGA FIBROZA CISTIKE K\u00cbRKOJN\u00cb Q\u00cb QEVERIA E ZAEVIT T\u2019UA KTHEJ\u00cb T\u00cb DREJT\u00cbN E JET\u00cbS - \u0421\u0430\u043a\u0430\u043c \u0414\u0430 \u041a\u0430\u0436\u0430\u043c<\/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:\/\/sdk.mk\/index.php\/histori-te-parrefyera\/femijet-e-semure-nga-fibroza-cistike-kerkojne-qe-qeveria-e-zaevit-t-ua-ktheje-te-drejten-e-jetes\/\" \/>\n<meta property=\"og:locale\" content=\"mk_MK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"F\u00cbMIJ\u00cbT E S\u00cbMUR\u00cb NGA FIBROZA CISTIKE K\u00cbRKOJN\u00cb Q\u00cb QEVERIA E ZAEVIT T\u2019UA KTHEJ\u00cb T\u00cb DREJT\u00cbN E JET\u00cbS - 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