Centrul Na\u021bional de Fibroz\u0103 Chistic\u0103 \u2013 Mucoviscidoz\u0103 de la Timi\u0219oara func\u021bioneaz\u0103 \u00een cadrul Clinicii de Pediatrie II Bega \u0219i reprezint\u0103 unul dintre principalele locuri din Rom\u00e2nia unde sunt trata\u021bi copiii diagnostica\u021bi cu una dintre cele mai grave boli genetice.<\/p>\n
Fibroza chistic\u0103 este o afec\u021biune ereditar\u0103 complex\u0103, \u00eencadrat\u0103 \u00een categoria bolilor rare. Boala afecteaz\u0103 \u00een special pl\u0103m\u00e2nii \u0219i sistemul digestiv, dar, \u00een timp, poate implica \u00eentregul organism. Este cunoscut\u0103 \u0219i sub denumirea de \u201eboala celor 65 de trandafiri\u201d, expresie derivat\u0103 din asem\u0103narea fonetic\u0103 dintre \u201esixtyfiveroses\u201d \u0219i \u201ecystic fibrosis\u201d.<\/p>\n
F\u0103r\u0103 un diagnostic precoce \u0219i o monitorizare atent\u0103, evolu\u021bia bolii poate fi sever\u0103. Afec\u021biunea afecteaz\u0103 celulele care produc mucus, transpira\u021bie \u0219i sucuri digestive. \u00cen cazul copiilor diagnostica\u021bi, o muta\u021bie genetic\u0103 determin\u0103 formarea unor secre\u021bii dense \u0219i lipicioase, care blocheaz\u0103 c\u0103ile respiratorii \u0219i canalele pancreasului.<\/p>\n
\u201eFibroza chistic\u0103 este o boal\u0103 pentru al c\u0103rei tratament este necesar\u0103 o echip\u0103 multidisciplinar\u0103, din care fac parte pneumologi pediatri, gastroenterologi, speciali\u0219ti \u00een boli metabolice \u0219i nutri\u021bie \u0219i, \u00een anumite cazuri, medici ATI. Este o boal\u0103 progresiv\u0103 care necesit\u0103 o gestionare zilnic\u0103 a simptomelor. Tratamentele moderne \u0219i monitorizarea atent\u0103 le permit, \u00eens\u0103, pacien\u021bilor s\u0103 aib\u0103 o calitate relativ bun\u0103 a vie\u021bii, iar speran\u021ba de via\u021b\u0103 poate ajunge \u0219i la 50 de ani. La fel ca \u00een cazul altor boli rare, diferen\u021ba nu o face doar tratamentul, ci \u0219i momentul depist\u0103rii. Un diagnostic pus timpuriu duce la \u00eencetinirea progresiei bolii \u0219i la prevenirea complica\u021biilor severe\u201d, explic\u0103 prof. dr. Ioana Ciuc\u0103, medic primar pneumolog pediatru \u0219i coordonator al Compartimentului de Pneumologie Pediatric\u0103 din cadrul Clinicii II Bega Timi\u0219oara.<\/p>\n
Boala are manifest\u0103ri variate, de la bron\u0219ite \u0219i pneumonii repetate, p\u00e2n\u0103 la diaree cronic\u0103, stagnare \u00een greutate \u0219i deficit de vitamine. Diagnosticul \u0219i tratamentul sunt specifice \u0219i se realizeaz\u0103 exclusiv \u00een centre specializate.<\/p>\n
Confirmarea fibrozei chistice se face prin testul sudorii, investiga\u021bii genetice \u0219i evalu\u0103ri clinice complexe. Copiii suspecta\u021bi sunt direc\u021biona\u021bi c\u0103tre centre dedicate, precum cel de la Timi\u0219oara, pentru stabilirea diagnosticului.<\/p>\n
\u201eCentrul Na\u021bional de Fibroz\u0103 Chistic\u0103 \u2013 Mucoviscidoz\u0103 de la Timi\u0219oara coordoneaz\u0103 cazurile la nivel na\u021bional, stabile\u0219te protocoalele de diagnostic, tratament \u0219i monitorizare \u0219i, \u00een acela\u0219i timp, centralizeaz\u0103 datele despre pacien\u021bii din \u00eentreaga \u021bar\u0103. Misiunea acestui centru este de a asigura un management integrat al micilor pacien\u021bi, la nivelul standardelor interna\u021bionale de \u00eengrijire. Practic, aici, \u00een Centrul Na\u021bional de la Clinica de Pediatrie II Bega, se stabile\u0219te diagnosticul precoce \u0219i se confirm\u0103 boala, au loc evalu\u0103ri clinice \u0219i func\u021bionale respiratorii periodice, sunt monitorizate afect\u0103rile pulmonare \u0219i digestive \u0219i se realizeaz\u0103 managementul exacerb\u0103rilor respiratorii \u0219i al complica\u021biilor, prin internare \u00een Compartimentul de Pneumologie Pediatric\u0103. \u00cen plus, exist\u0103 o coordonare a tratamentelor cronice \u0219i a terapiilor specifice\u201d, precizeaz\u0103 prof. dr. Ioana Ciuc\u0103.<\/p>\n
Centrul de la Timi\u0219oara este integrat \u00een re\u021beaua european\u0103 de referin\u021b\u0103 pentru bolile respiratorii rare, European Reference Network ERN-LUNG.<\/p>\n<\/div>\n
[analyse_source url=”https:\/\/timisplus.ro\/centrul-din-timisoara-unde-copiii-cu-fibroza-chistica-primesc-tratament-specializat\/”]<\/p>\n","protected":false},"excerpt":{"rendered":"
[analyse_image type=”featured” src=””] Centrul Na\u021bional de Fibroz\u0103 Chistic\u0103 \u2013 Mucoviscidoz\u0103 de la Timi\u0219oara func\u021bioneaz\u0103 \u00een cadrul Clinicii de Pediatrie II Bega \u0219i reprezint\u0103 unul dintre principalele locuri din Rom\u00e2nia unde sunt trata\u021bi copiii diagnostica\u021bi cu una dintre cele mai grave boli genetice. Fibroza chistic\u0103 este o afec\u021biune ereditar\u0103 complex\u0103, \u00eencadrat\u0103 \u00een categoria bolilor rare. Boala […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[89],"tags":[226,195],"class_list":["post-1860835","post","type-post","status-publish","format-standard","hentry","category-romania","tag-crawlmanager","tag-timisplus-ro"],"_links":{"self":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/posts\/1860835","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=1860835"}],"version-history":[{"count":0,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=\/wp\/v2\/posts\/1860835\/revisions"}],"wp:attachment":[{"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1860835"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1860835"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/analyse.optim.biz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1860835"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}