{"id":6502,"date":"2026-08-12T09:27:10","date_gmt":"2026-08-12T07:27:10","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6502"},"modified":"2026-08-12T09:29:03","modified_gmt":"2026-08-12T07:29:03","slug":"vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom\/","title":{"rendered":"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom"},"content":{"rendered":"

Josipina pri\u010da<\/mark><\/strong><\/p>\n\n\n\n

U kolovozu obilje\u017eavamo Mjesec svjesnosti o spinalnoj mi\u0161i\u0107noj atrofiji (SMA) \u2013 mjesec u kojem posebno slavimo snagu, hrabrost i \u017eivote ljudi koji \u017eive sa SMA. Ali i podi\u017eemo svijest o ovoj nasljednoj, progresivnoj neuromuskularnoj bolesti, va\u017enosti rane dijagnoze i lije\u010denja.<\/p>\n\n\n\n

Jer SMA mo\u017ee biti dio ne\u010dijeg \u017eivota, ali nikada nije ono \u0161to tu osobu u potpunosti definira. Iza svake dijagnoze nalazi se osoba sa svojim \u017eeljama, planovima, osobinama, snovima i svakodnevnim \u017eivotom.<\/p>\n\n\n\n

Jedna od njih je Josipa.<\/p>\n\n\n\n

\u201eSMA je dio mog \u017eivota, ali nije cijela moja pri\u010da.\u201c Tim rije\u010dima Josipa zapo\u010dinje svoju pri\u010du o \u017eivotu sa spinalnom mi\u0161i\u0107nom atrofijom.<\/p>\n\n\n\n

Josipa ima 33 godine. Supruga je, majka dviju djevoj\u010dica i radi posao koji voli. Njezin dan ispunjavaju jutarnja kava, posao, obitelj, smijeh i svakodnevne obaveze \u2013 kao i kod mnogih drugih. Ipak, \u017eivot sa spinalnom mi\u0161i\u0107nom atrofijom donosi odre\u0111ene izazove i neizvjesnosti. Nije uvijek lako jer ne znate \u0161to donosi sutra, ali, kako Josipa ka\u017ee, nau\u010dila je \u017eivjeti dan po dan i ne dopustiti da ju strah od budu\u0107nosti sprije\u010di da \u017eivi sada i ovdje.<\/p>\n\n\n\n

Danas, uz podr\u0161ku obitelji i prijatelja te napredak medicine, Josipa \u017eivi s manje boli i vi\u0161e mogu\u0107nosti. Mogu\u0107nosti da radi, brine o svojoj obitelji, u\u017eiva u svakodnevnim trenucima i planira budu\u0107nost. Pro\u0161le je godine sa suprugom gradila ku\u0107u. A jedna od najva\u017enijih uloga u njezinu \u017eivotu je ona majke. Njezina mla\u0111a k\u0107i Lara tako\u0111er \u017eivi sa SMA.<\/p>\n\n\n\n

\u201eSMA mo\u017eda mijenja \u017eivot, ali ne oduzima mogu\u0107nost da bude\u0161 sretan, da radi\u0161, voli\u0161 i stvara\u0161 obitelj.\u201c<\/p>\n\n\n\n

A \u0161to bi poru\u010dila osobi koja se tek suo\u010dava s dijagnozom? Pogledajte Josipinu pri\u010du.<\/p>\n\n\n\n

Budu\u0107nost se ne podrazumijeva. Zato je va\u017eno o njoj govoriti.<\/p>\n\n\n\n

#MjesecSMA #SMA #SpinalnaMi\u0161i\u0107naAtrofija<\/p>\n\n\n

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Josipina pri\u010da U kolovozu obilje\u017eavamo Mjesec svjesnosti o spinalnoj mi\u0161i\u0107noj atrofiji (SMA) \u2013 mjesec u kojem posebno slavimo snagu, hrabrost i \u017eivote ljudi koji \u017eive sa SMA. Ali i podi\u017eemo svijest o ovoj nasljednoj, progresivnoj neuromuskularnoj bolesti, va\u017enosti rane dijagnoze i lije\u010denja. Jer SMA mo\u017ee…<\/p>","protected":false},"author":3,"featured_media":6513,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1,34],"tags":[],"class_list":["post-6502","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-rijetka-infoteka"],"yoast_head":"\nVi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - Hrvatski savez za rijetke bolesti<\/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:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Josipina pri\u010da U kolovozu obilje\u017eavamo Mjesec svjesnosti o spinalnoj mi\u0161i\u0107noj atrofiji (SMA) \u2013 mjesec u kojem posebno slavimo snagu, hrabrost i \u017eivote ljudi koji \u017eive sa SMA. 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