{"id":4417,"date":"2012-02-29T17:00:00","date_gmt":"2012-02-29T19:00:00","guid":{"rendered":"https:\/\/www.silutesnaujienos.lt\/lt\/pacientu-bendruomenes-pasauline-retu-ligu-diena-isgirskime-vieni-kitus\/"},"modified":"2012-02-29T17:00:00","modified_gmt":"2012-02-29T19:00:00","slug":"pacientu-bendruomenes-pasauline-retu-ligu-diena-isgirskime-vieni-kitus","status":"publish","type":"post","link":"https:\/\/www.silutesnaujienos.lt\/lt\/pacientu-bendruomenes-pasauline-retu-ligu-diena-isgirskime-vieni-kitus\/","title":{"rendered":"Pacient\u0173 bendruomen\u0117s: pasaulin\u0119 ret\u0173 lig\u0173 dien\u0105 i\u0161girskime vieni kitus"},"content":{"rendered":"

\"Kristina<\/a>Per\u017evelg\u0119 kalendori\u0173 pamatysime, kad kiekvien\u0105 m\u0117nes\u012f viena ar kelios dienos yra skirtos konkre\u010dioms ligoms pamin\u0117ti. Taip yra skatinamas visuomen\u0117s s\u0105moningumas, atkreipiamas d\u0117mesys \u012f ligos u\u017eklauptus \u017emones ir problemas, su kuriomis jie susiduria.<\/strong><\/p>\n

Vasario 29-oji \u2013 Pasaulin\u0117 ret\u0173 lig\u0173 diena. Nors Lietuvoje \u0161i diena \u012ftraukta \u012f atmintin\u0173 dien\u0173 s\u0105ra\u0161\u0105, ji minima tyliai. Galb\u016bt tod\u0117l, kad apie retas ligas \u017einome nedaug, o \u017emon\u0117s, kurie gal\u0117t\u0173 vie\u0161ai apie jas papasakoti, i\u0161sibarst\u0119 po vis\u0105 \u0161al\u012f, ir did\u017eioji j\u0173 dalis \u2013 u\u017esidar\u0119s savame rate, su savo problemomis ir mintimis.<\/p>\n

Vienas lauke \u2013 ne karys<\/strong><\/p>\n

Retos ligos diagnoz\u0119 i\u0161gird\u0119 \u017emon\u0117s reaguoja skirtingai. Vieni sugeba rasti savyje j\u0117g\u0173 ir stoja \u012f kov\u0105 ne tik u\u017e save ar savo artim\u0105, bet ir u\u017e kitus to paties likimo i\u0161tiktus \u017emones. Suprantama, kad toki\u0173 stipri\u0173 \u017emoni\u0173 nedaug, bet jie po truput\u012f lau\u017eia ledus ir \u012f vie\u0161um\u0105 kelia ret\u0173 lig\u0173 problematik\u0105.<\/p>\n

Kita sergan\u010di\u0173j\u0173 grup\u0117 \u2013 vieni\u0161i, vilt\u012f prarad\u0119 ir savyje u\u017esisklend\u0119 \u017emon\u0117s. Juos liga paveikia taip stipriai, kad, nenor\u0117dami tapti na\u0161ta, jie atsiriboja nuo aplinkini\u0173 ir stengiasi savaranki\u0161kai kovoti su savo problemomis.<\/p>\n

\u201eRetosios ligos  pasitaiko retai ir santykinai pacient\u0173 yra ma\u017eai, ta\u010diau pa\u010di\u0173 lig\u0173 yra daug ir \u012fvairi\u0173.  Sunkiausia, kai susergama liga, kuria Lietuvoje dar niekas nesirgo. Tuomet net ir gydytojai ma\u017eai kuo gali pad\u0117ti, nes papras\u010diausiai n\u0117ra praktikos, n\u0117ra patirties, \u2013 kalba Kristina Antanavi\u010dien\u0117, Lietuvos sergan\u010di\u0173j\u0173 genetin\u0117mis nerv\u0173-raumen\u0173 ligomis asociacijos \u201eSraunija\u201c vadov\u0117. \u2013 Tod\u0117l \u0161i\u0173 met\u0173 \u0161\u016bkis \u2013  \u201eM\u016bs\u0173 ma\u017eai, bet kartu mes stipr\u016bs\u201c \u2013 atspindi pagrindin\u0119 mint\u012f: tik susivienij\u0119 galime sau pad\u0117ti\u201c.<\/p>\n

Jai antrina ir Au\u0161ra Stan\u010dikien\u0117, paramos ir labdaros fondo \u201eAlgojimas\u201c vadov\u0117.<\/p>\n

\u201eLietuvoje pacient\u0173 organizacijos per daug susiskald\u017eiusios, per ma\u017eai bendrauja tarpusavyje. Reikia suprasti, kad visi kartu gal\u0117tume pasiekti daugiau, kad nereikia bijoti kalb\u0117ti apie savo problemas, nes kai apie jas nekalbame, kitiems atrodo, kad j\u0173 n\u0117ra. Turime perimti u\u017esienio patirt\u012f, kai d\u0117l vieno tikslo vienijasi pacientai, gydytojai ir net farmacininkai\u201c, \u2013 kalba p. Au\u0161ra.<\/p>\n

Svarbu medik\u0173 \u012fsitraukimas<\/strong><\/p>\n

Gydytoja infektolog\u0117 Audron\u0117 Marcinkut\u0117 dalinasi asmenine patirtimi apie gydytoj\u0173 \u012fsitraukim\u0105 \u012f pacient\u0173 organizacij\u0173 veikl\u0105.<\/p>\n

\u201eVie\u0161\u0117dama Ciuriche buvau maloniai nustebinta, kuomet AIDS sergan\u010di\u0173 pacient\u0173 bendruomen\u0117s organizuotame vakare dalyvavo ir juos globojantys medikai. Apskritai, Vakaruose daug d\u0117mesio skiriama profesionaliajai medicininei pagalbai, tarp pacient\u0173 ir gydytoj\u0173 jau\u010diamas stiprus dvasinis ry\u0161ys, \u2013 pasakoja infektolog\u0117. \u2013 O Lietuvoje labai populiar\u0117ja internetin\u0117 medicina \u2013 sergantieji patys ie\u0161ko informacijos apie lig\u0105, jos gydym\u0105, net vaistus patys siun\u010diasi i\u0161 u\u017esienio. \u017dinoma, yra keletas tikrai profesionali\u0173 sveikatos tinklalapi\u0173, ta\u010diau internete gausu ir klaidingos informacijos, tod\u0117l galutin\u012f \u017eod\u012f d\u0117l gydymo visuomet turi tarti gydytojas\u201c.\"Au\u0161ra<\/a><\/p>\n

Anot Evaldo Rim\u0161elio, retus vaistus Lietuvoje tiekian\u010dios didmenin\u0117s platinimo kompanijos \u201eLexano\u201c vadovo, gydytojai Lietuvoje labiausiai i\u0161 vis\u0173 Baltijos \u0161ali\u0173 domisi inovacijomis ir naujais gydymo b\u016bdais.<\/p>\n

\u201ePastaraisiais metais daug\u0117ja gydytoj\u0173 u\u017eklaus\u0173 u\u017eklausim\u0173 d\u0117l Lietuvoje neregistruot\u0173 ret\u0173 vaist\u0173 tiekimo. Da\u017enai lai\u0161k\u0173 bei skambu\u010di\u0173 sulaukiame po pasaulini\u0173 konferencij\u0173, kuri\u0173 metu pristatomi nauji ret\u0173 lig\u0173 gydymo b\u016bdai. Be to, \u012f mus kreipiasi ir vaist\u0173 didmenininkai i\u0161 Latvijos bei Estijos. Tai tik \u012frodo, kad ir kaimynin\u0117se \u0161alyse auga dom\u0117jimasis ret\u0173 lig\u0173 gydymo galimyb\u0117mis\u201c, \u2013 kalba vadovas.<\/p>\n

Viena did\u017eiausi\u0173 problem\u0173 \u2013 informacijos tr\u016bkumas<\/strong><\/p>\n

Visgi informacijos apie retas ligas Lietuvoje i\u0161ties ma\u017eai ir tai labai apsunkina j\u0173 diagnoz\u0119 ir gydym\u0105. \u201eKai t\u0117vai su\u017eino, kad j\u0173 vaikelis gims su reta liga, u\u017eklumpa baim\u0117s ir kalt\u0117s jausmas. Tuo metu norisi gauti kiek \u012fmanoma daugiau atsakym\u0173, kaip elgtis, kas laukia ateityje, ta\u010diau atsitrenkiama \u012f ne\u017einomyb\u0117s sien\u0105, nes informacijos apie retas ligas yra labai ma\u017eai ir net gydytojai ne visada gali i\u0161samiai apie jas papasakoti\u201c, \u2013 asmenine patirtimi dalinasi Au\u0161ra Stan\u010dikien\u0117, paramos ir labdaros fondo<\/p>\n

\u201eAlgojimas\u201c vadov\u0117 \u201eSraunijos\u201c vadov\u0117 Kristina Antanavi\u010dien\u0117, siekdama i\u0161siai\u0161kinti, su kokiomis problemomis susiduria nerv\u0173 ir raumen\u0173 ligomis sergantys \u017emon\u0117s, atliko sergan\u010di\u0173j\u0173 apklaus\u0105. Jos rezultatai atskleid\u0117, kad sergantiesiems aktualiausios yra \u0161ios problemos: diagnoz\u0117s nustatymas ir pateikimas, informacijos stoka tiek pacientams, tiek medikams, ne\u012fgalumo nustatymo problemos, socialin\u0117s problemos ir prie\u017ei\u016bra. Galima daryti prielaid\u0105, kad pana\u0161ios ar net tokios pat problemos vargina ir kitomis retomis ligomis sergan\u010dius \u017emones.<\/p>\n

Gydytoja infektolog\u0117 Audron\u0117 Marcinkut\u0117 pritaria, kad informacijos apie retas ligas tr\u016bksta ir patiems medikams.<\/p>\n

\u201ePraktikoje ne kart\u0105 teko susidurti su retomis ligomis, kurias tur\u0117jau galimyb\u0119 pa\u017einti sta\u017euodamasi kitose \u0161alyse. B\u016btent sta\u017euot\u0117se, pasaulin\u0117se konferencijose semiam\u0117s patirties apie ret\u0173 lig\u0173 diagnoz\u0119 ir gydym\u0105. Su kolegomis i\u0161 u\u017esienio konsultuojam\u0117s ir nuotoliniu b\u016bdu. Kiekvienam medikui susid\u016brimas su itin reta liga \u2013 i\u0161\u0161\u016bkis\u201c, \u2013 \u012fsitikinusi medik\u0117.<\/p>\n

Nacionalinio ret\u0173 lig\u0173 registro nauda \u2013 neabejotina<\/strong><\/p>\n

Visi pa\u0161nekovai vieningai sutaria, kad svarbus \u017eingsnis gydant retas ligas b\u016bt\u0173 \u017eengtas suk\u016brus Nacionalin\u012f ret\u0173 lig\u0173 registr\u0105, kuriame b\u016bt\u0173 kaupiama informacija apie retomis ligomis sergan\u010dius pacientus. \u201eTurint Nacionalin\u012f registr\u0105 b\u016bt\u0173 galimyb\u0117 prisijungti prie tarptautinio registro. Tai b\u016bt\u0173 didelis laim\u0117jimas, nes gydytojai tur\u0117t\u0173 galimyb\u0119 naudotis pasauline patirtimi gydant retas ligas\u201c, \u2013 \u012fsitikinusi \u201eSraunijos\u201c vadov\u0117.<\/p>\n

\u201eInformacijos pasiekiamumo klausimas i\u0161ties aktualus. Europos S\u0105jungoje daug d\u0117mesio skiriama  ret\u0173 lig\u0173 problematikai. Deja, Lietuvoje vis dar pasitaiko atvej\u0173, kuomet net medikai ne\u017eino apie tai, kad \u0161iandien yra galimyb\u0117 operatyviai gauti Lietuvoje neregistruot\u0105 vaist\u0105 be ilg\u0173 ir varginan\u010di\u0173 proced\u016br\u0173\u201c, \u2013 kalba \u201eLexano\u201c vadovas.<\/p>\n

Anot pacient\u0173 bendruomeni\u0173 atstovi\u0173, Lietuvoje buriasi pavien\u0117s medik\u0173 grupel\u0117s, kurios, atkreipusios d\u0117mes\u012f \u012f pacient\u0173 i\u0161sakytas b\u0117das, gilinasi \u012f konkre\u010dias ligas. J\u0173 pagalba ir ind\u0117lis labai svarbus, tod\u0117l nor\u0117t\u0173si tik\u0117ti, kad tos pastangos neatsitrenks \u012f Lietuvos medicinos sistemos sien\u0105 ir nenueis veltui.<\/p>\n

Informacija apie retas ligas (\u0161altinis www.ec.europa.eu, www.lexano.lt)<\/em><\/p>\n\n\n\n
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    \n
  • Europos S\u0105jungoje ret\u0105ja laikoma liga, kuria serga ma\u017eiau nei 1 i\u0161 2 000 \u017emoni\u0173.<\/li>\n
  • \u017dinoma ma\u017edaug 7 000 ret\u0173j\u0173 lig\u0173.<\/li>\n
  • Did\u017ei\u0105j\u0105 dal\u012f (apie 80 proc.) ret\u0173j\u0173 lig\u0173 lemia genetiniai sutrikimai, bet dar viena prie\u017eastis yra aplinkos veiksniai n\u0117\u0161tumo metu arba v\u0117lesniame am\u017eiuje \u2013 da\u017enai kartu su genetiniu polinkiu.<\/li>\n
  • Kai kurios retos ligos yra retos \u012fprast\u0173 lig\u0173 formos arba j\u0173 komplikacijos.<\/li>\n
  • 50 proc. \u0161i\u0173 lig\u0173 susergama vaikyst\u0117je.<\/li>\n
  • Daugiau kaip 50 proc. ret\u0173j\u0173 lig\u0173 susergama suaugus.<\/li>\n
  • Retos ligos da\u017enai kelia gr\u0117sm\u0119 gyvybei arba nuolat sekina.<\/li>\n
  • Ret\u0173 lig\u0173 gydymui reikalingi vaistai Lietuvoje neregistruojami. Jie tiekiami pagal vardin\u012f recept\u0105, kur\u012f i\u0161ra\u0161o gydytojas.<\/li>\n
  • ES \u0161alyse ret\u0173 vaist\u0173 kainos skiriasi. Platus ret\u0173 vaist\u0173 paie\u0161kos tinklas suteikia galimyb\u0119 rasti ma\u017eiausios kainos vaisto pasi\u016blym\u0105.<\/li>\n<\/ul>\n<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n","protected":false},"excerpt":{"rendered":"

    Per\u017evelg\u0119 kalendori\u0173 pamatysime, kad kiekvien\u0105 m\u0117nes\u012f viena ar kelios dienos yra skirtos konkre\u010dioms ligoms pamin\u0117ti. Taip yra skatinamas visuomen\u0117s s\u0105moningumas, atkreipiamas d\u0117mesys \u012f ligos u\u017eklauptus \u017emones ir problemas, su kuriomis jie susiduria. Vasario 29-oji \u2013 Pasaulin\u0117 ret\u0173 lig\u0173 diena. Nors Lietuvoje \u0161i diena \u012ftraukta \u012f atmintin\u0173 dien\u0173 s\u0105ra\u0161\u0105, ji minima tyliai. Galb\u016bt tod\u0117l, kad apie […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[53],"tags":[],"class_list":["post-4417","post","type-post","status-publish","format-standard","category-sveikatos-saltinis"],"yoast_head":"\nPacient\u0173 bendruomen\u0117s: pasaulin\u0119 ret\u0173 lig\u0173 dien\u0105 i\u0161girskime vieni kitus - \u0160ilut\u0117s naujienos<\/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:\/\/www.silutesnaujienos.lt\/lt\/pacientu-bendruomenes-pasauline-retu-ligu-diena-isgirskime-vieni-kitus\/\" \/>\n<meta property=\"og:locale\" content=\"lt_LT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pacient\u0173 bendruomen\u0117s: pasaulin\u0119 ret\u0173 lig\u0173 dien\u0105 i\u0161girskime vieni kitus - \u0160ilut\u0117s naujienos\" \/>\n<meta property=\"og:description\" content=\"Per\u017evelg\u0119 kalendori\u0173 pamatysime, kad kiekvien\u0105 m\u0117nes\u012f viena ar kelios dienos yra skirtos konkre\u010dioms ligoms pamin\u0117ti. Taip yra skatinamas visuomen\u0117s s\u0105moningumas, atkreipiamas d\u0117mesys \u012f ligos u\u017eklauptus \u017emones ir problemas, su kuriomis jie susiduria. Vasario 29-oji \u2013 Pasaulin\u0117 ret\u0173 lig\u0173 diena. Nors Lietuvoje \u0161i diena \u012ftraukta \u012f atmintin\u0173 dien\u0173 s\u0105ra\u0161\u0105, ji minima tyliai. 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