{"id":195591,"date":"2021-07-10T21:09:45","date_gmt":"2021-07-10T21:09:45","guid":{"rendered":"https:\/\/bm.dev.synology.me\/?p=195591"},"modified":"2021-07-10T21:09:45","modified_gmt":"2021-07-10T21:09:45","slug":"cel-mai-scump-medicament-din-lume-costa-2-milioane-de-dolari-ce-afectiune-trateaza","status":"publish","type":"post","link":"https:\/\/bm.dev.synology.me\/?p=195591","title":{"rendered":"Cel mai scump medicament din lume cost\u0103 2 milioane de dolari. Ce afec\u0163iune trateaz\u0103"},"content":{"rendered":"<div style=\"text-align: justify\">\n2 milioane de dolari. At\u00e2t cost\u0103 cel mai scump medicament din lume.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\nZolgesma este \u015fansa unei vie\u0163i normale pentru copiii diagnostica\u0163i cu atrofie muscular\u0103 spinal\u0103. Este o boal\u0103 rar\u0103, care necesit\u0103 un tratament complex \u015fi extrem de scump.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\n\u00cen Rom\u00e2nia nu exist\u0103 acest medicament, dar avem Spinrazza. Acest medicament este primul pas \u00een combaterea acestei boli.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\nIrina este mama lui Robert. Cea care a reu\u015fit s\u0103 mute mun\u0163ii din loc \u015fi s\u0103 porneasc\u0103 o campanie online prin care a reu\u015fit s\u0103 str\u00e2ng\u0103 to\u0163i banii pentru ca Robert s\u0103 duc\u0103 o via\u0163\u0103 normal\u0103.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\n<strong>\u201eSMA este o boal\u0103 foarte complex\u0103 care afecteaz\u0103 extraordinar de multe puncte \u015fi respectiv trebuie s\u0103 analizezi per ansamblu fiecare p\u0103rticic\u0103. Am apreciat foarte mult c\u0103 avem spinraza \u015fi nici ea nu este ieftin\u0103 e 72.0000 de euro o singur\u0103 doz\u0103 \u015fi copilul are nevoie de trei doze \u00een fiecare an, toat\u0103 via\u0163a sa. Noi suntem la spitalul Rob\u0103nescu, iar doctorii de acolo sunt efectiv ni\u015fte \u00eengeri pe p\u0103m\u00e2nt. Ei real se lupt\u0103\u201d<\/strong>, a spus Irina, mama lui Robert.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\nProgresele se v\u0103d \u015fi asta este cel mai important. <strong>\u201eE bine, cognitiv, copila\u015fii cu SMA sunt la fel ca to\u0163i ceilal\u0163i copila\u015fi, la o s\u0103pt\u0103m\u00e2n\u0103 dup\u0103 Zolgesma el a \u00eenceput s\u0103 se rostogoleasc\u0103, a \u00eenceput s\u0103 fie mai bine pe parte de gluti\u0163ie, noi riscam atunci c\u00e2nd eram \u00een state, doctorii au pus foarte mult\u0103 presiune pe noi s\u0103-i punem gastrostom\u0103, \u015fi noi am insistat \u015fi am refuzat \u015fi eram a\u015fa pe muchie de cu\u0163it \u015fi ne-au dat o s\u0103pt\u0103m\u00e2n\u0103 termen, s\u0103 vedem dac\u0103 ia \u00een greutate, \u015fi a luat, acum este un m\u00e2nc\u0103cios, \u00eei place tot, e foarte pofticios, este mult mai bine pe parte de respira\u0163ie\u201d,&nbsp;<\/strong> a spus aceasta.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\nDup\u0103 progresul celui mic, Irina \u00ee\u015fi mai dore\u015fte un singur lucru. De data asta, de la viitorii p\u0103rin\u0163i \u015fi de la autorit\u0103\u0163i. <strong>\u201eMi-a\u015f dori s\u0103 \u00eendem pe aceast\u0103 cale p\u0103rin\u0163ii s\u0103-\u015fi fac\u0103 testarea genetic\u0103, pentru c\u0103 un om din 40 de persoane, este purt\u0103tor de SMA \u015fi dac\u0103 mama \u00ee\u015fi face testarea \u015fi vede c\u0103 este pozitiv\u0103, atunci \u015fi tat\u0103l s\u0103-\u015fi fac\u0103 testarea \u015fi exist\u0103 \u015fanse de 25% ca copilul s\u0103 fie afectat. Cred cu t\u0103rie c\u0103 acest\u0103 testare ar putea face statul rom\u00e2n s\u0103 aprobe screeningul neonatal, astfel \u00eenc\u00e2t niciun alt copila\u015f s\u0103 nu \u015ftie ce \u00eenseamna SMA\u201d.<\/strong><\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\nSMA este atrofia muscular\u0103 spinal\u0103 care afecteaz\u0103 neuronii din m\u0103duva spin\u0103rii, adesea \u015fi pe cei din trunchiul celebral, duc\u00e2nd la moartea acestora. SMA1 este cea mai sever\u0103 din punct de vedere a evolu\u0163iei \u015fi progresului, aproximativ dou\u0103 treimi din copiii diagnostica\u0163i mor de stop respirator \u00eenainte de v\u00e2rsta de 3 ani. Pe l\u00e2ng\u0103 Zolgesma, Spinrazza este prima doz\u0103 de tratament pe care un copil diagnosticat trebuie s\u0103 o ia. Nici aceasta nu este mai accesibil\u0103, o singur\u0103 doz\u0103 cost\u0103 undeva la 72.000 de euro \u015fi un copil are nevoie de 3 doze anual, toat\u0103 via\u0163a lui.<\/div>\n<div style=\"text-align: justify\">\n&nbsp;<\/div>\n<div style=\"text-align: justify\">\n<br \/>\n&nbsp;<\/div>\n","protected":false},"excerpt":{"rendered":"<p>2 milioane de dolari. At\u00e2t cost\u0103 cel mai scump medicament din lume. &nbsp; Zolgesma este \u015fansa unei vie\u0163i normale pentru copiii diagnostica\u0163i cu atrofie muscular\u0103 spinal\u0103. Este o boal\u0103 rar\u0103, care necesit\u0103 un tratament complex \u015fi extrem de scump. &nbsp; \u00cen Rom\u00e2nia nu exist\u0103 acest medicament, dar avem Spinrazza. Acest medicament este primul pas \u00een [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[510],"tags":[14023,13292,18526,23674,553,15278,10157,7283,32766,274,4116,17570,323,406,32883,10162,31857,31171,80,86,98,97,12923,32958,231],"class_list":["post-195591","post","type-post","status-publish","format-standard","hentry","category-actualitate","tag-boala","tag-boli","tag-combatere","tag-complex","tag-copii","tag-copil","tag-cost","tag-costuri","tag-folosire","tag-incepere","tag-mai","tag-mama","tag-medicamente","tag-medici","tag-normal","tag-parinti","tag-primire","tag-progres","tag-refuz","tag-reusita","tag-romania","tag-testare","tag-tratament","tag-trecere","tag-viata"],"_links":{"self":[{"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=\/wp\/v2\/posts\/195591","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=195591"}],"version-history":[{"count":0,"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=\/wp\/v2\/posts\/195591\/revisions"}],"wp:attachment":[{"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=195591"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=195591"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/bm.dev.synology.me\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=195591"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}