{"id":2269,"date":"2022-07-29T01:04:25","date_gmt":"2022-07-29T01:04:25","guid":{"rendered":"https:\/\/lupus100.org\/?page_id=2269"},"modified":"2023-03-30T11:09:11","modified_gmt":"2023-03-30T11:09:11","slug":"about-lupus","status":"publish","type":"page","link":"https:\/\/lupus100.org\/sr\/about-lupus","title":{"rendered":"About lupus"},"content":{"rendered":"
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O inicijativi<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t100 PITANJA\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Osobe koje \u017eive sa lupusom i njihovi bli\u017enji, medicinske sestre, studenti medicine, pa \u010dak i lekari koji nisu specijalisti, redovno se suo\u010davaju sa pitanjima o lupusu.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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O inicijativi<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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IN<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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100 PITANJA<\/h1>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Osobe koje \u017eive sa lupusom i njihovi bli\u017enji, medicinske sestre, studenti medicine, pa \u010dak i lekari koji nisu specijalisti, redovno se suo\u010davaju sa pitanjima o lupusu.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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100 pitanja koja treba postaviti o lupusu<\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Osobe koje \u017eive sa lupusom, njihovi ro\u0111aci, medicinske sestre, studenti medicine, pa \u010dak i lekari koji nisu specijalizovani za ovu bolest, redovno se suo\u010davaju sa pitanjima o lupusu \u2013 bolesti sa hiljadu lica. Dok \u0107e neki imati pristup proverenim informacijama, mnogi \u0107e se osloniti na internet, gde \u0107e ih \u201eod usta do usta\u201c prenete informacije, neprovereni podaci, glasine ili nepotvr\u0111ena istra\u017eivanja dodatno zbuniti, izazvati anksioznost, pa \u010dak i navesti na pogre\u0161ne postupke.<\/p>

Jo\u0161 2010. godine, pod rukovodstvom profesora Maksima Dugadoa (Maxime Dougados), francuski referentni centri za lupus su se pozabavili ovim problemom objavljivanjem bro\u0161ure \u201e100 pitanja o lupusu\u201c. Ova publikacija je brzo postala popularna me\u0111u pacijentima i udru\u017eenjima pacijenata u Francuskoj i susednim frankofonim zemljama. Kako su saznanja o lupusu napredovala, bro\u0161ura je vi\u0161e puta a\u017eurirana, svaki put u saradnji izme\u0111u renomiranih francuskih stru\u010dnjaka za lupus i udru\u017eenja pacijenata.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Kao \u010dlan Evropske referentne mre\u017ee ReCONNET, koja okuplja vode\u0107e me\u0111unarodne stru\u010dnjake za lupus i druge bolesti vezivnog tkiva, Lupus Europe je prepoznao potrebu da sli\u010dne informacije budu dostupne ne samo u Francuskoj, ve\u0107 \u0161irom Evrope, kako bi sve osobe koje \u017eive sa lupusom imale pristup kvalitetnim informacijama na jeziku koji razumeju. Tako je 2021. godine pokrenut projekat prevo\u0111enja i prilago\u0111avanja francuske bro\u0161ure, uz podr\u0161ku ERN ReCONNET.<\/p>

Tokom proteklih meseci, kroz saradnju Lupus Europe\u2019s Patient Advisory Network, lekara specijalizovanih za lupus i izdava\u010dke ku\u0107e Katana Sant\u00e9 (vlasnika serijala \u201e100 pitanja\u201c), nastao je i veb-sajt na kojem se upravo nalazite. Lista pitanja je a\u017eurirana kako bi bolje odra\u017eavala trenutnu situaciju u Evropi, a svi odgovori su ponovo provereni kako bi se osigurala njihova ta\u010dnost i relevantnost.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Prevo\u0111enje je obavljeno s posebnom pa\u017enjom kako bi se osigurala i ta\u010dnost i \u010ditljivost za osobe kojima ovaj jezik nije maternji. Nadamo se da \u0107e vam ovo \u0161tivo pomo\u0107i da prona\u0111ete odgovore na va\u0161a pitanja o lupusu.<\/p>

Na\u0161 cilj je da ovu informaciju prevedemo na \u0161to vi\u0161e evropskih jezika, kako bismo obuhvatili \u0161to ve\u0107i broj pacijenata i lekara, pri \u010demu vodimo ra\u010duna da prevod bude visokog kvaliteta i da ga pregledaju i iskusni lekari i predstavnici pacijenata. Verujemo da \u0107e dostupnost ovih informacija na internetu, na jeziku koji ljudi razumeju, pomo\u0107i osobama koje \u017eive sa lupusom da dobiju ta\u010dne odgovore na svoja pitanja, umesto da ih tra\u017ee na nepouzdanim sajtovima ili dru\u0161tvenim mre\u017eama. Tako\u0111e, nadamo se da \u0107e ovo pomo\u0107i lekarima op\u0161te prakse, medicinskim sestrama i drugim zdravstvenim radnicima da pro\u0161ire svoje znanje o bolesti i njenim brojnim aspektima.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Tako\u0111e, bilo bi naivno misliti da ova lista od 100 pitanja mo\u017ee u potpunosti i zauvek odgovoriti na sva mogu\u0107a pitanja o lupusu ili da \u0107e dati re\u0161enja za sve probleme. Ove informacije nikada ne\u0107e mo\u0107i da zamene dijalog izme\u0111u pacijenta i njegovog\/njenog lekara specijaliste za lupus. Ipak, nadamo se da \u0107e podsta\u0107i pacijente da postavljaju pitanja i dobiju potrebna obja\u0161njenja.<\/p>

Sa na\u0161e strane, uspostavili smo proces redovnog a\u017euriranja odgovora i liste pitanja, kako bismo pratili nova saznanja i uklju\u010dili nova pitanja koja nam na\u0161i \u010ditaoci budu predlo\u017eili.<\/p>

Iz ugla \u010ditalaca \u2013 bilo da su osobe koje \u017eive sa lupusom ili zdravstveni radnici koji se susre\u0107u sa ovom bole\u0161\u0107u \u2013 nadamo se da \u0107e osnovno znanje koje pru\u017eamo doprineti otvaranju plodonosnog i informisanog dijaloga sa stru\u010dnjacima za lupus i organizacijama pacijenata, kako bi pro\u0161irili svoje znanje o bolesti i unapredili svoje ve\u0161tine u njenom upravljanju.<\/p>

Sre\u0107no \u010ditanje!<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

About 100 QUESTIONS People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus About IN 100 QUESTIONS People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus 100 QUESTIONS TO ASK […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-2269","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/pages\/2269","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/comments?post=2269"}],"version-history":[{"count":38,"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/pages\/2269\/revisions"}],"predecessor-version":[{"id":3934,"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/pages\/2269\/revisions\/3934"}],"wp:attachment":[{"href":"https:\/\/lupus100.org\/sr\/wp-json\/wp\/v2\/media?parent=2269"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}