{"id":11941,"date":"2024-07-30T16:33:00","date_gmt":"2024-07-30T14:33:00","guid":{"rendered":"https:\/\/hl-dizajn.hr\/?p=11941"},"modified":"2024-12-08T16:34:55","modified_gmt":"2024-12-08T15:34:55","slug":"kolovoz-mjesec-svjesnosti-o-sma","status":"publish","type":"post","link":"https:\/\/hl-dizajn.hr\/en\/kolovoz-mjesec-svjesnosti-o-sma\/","title":{"rendered":"Kolovoz &#8211; Mjesec svjesnosti o SMA"},"content":{"rendered":"<p>Mjesec&nbsp;<strong>kolovoz<\/strong>&nbsp;tradicionalno je posve\u0107en podizanju svijesti o&nbsp;<strong>spinalnoj mi\u0161i\u0107noj atrofiji (SMA)<\/strong>&nbsp;&#8211; te\u0161koj, nasljednoj, progresivnoj neuromuskularnoj bolesti koja se o\u010dituje atrofijom mi\u0161i\u0107a i drugim komplikacijama povezanima s bole\u0161\u0107u. SMA je vode\u0107i genetski uzrok smrti u dojen\u010dadi i djece, a svake godine pogodi 1 od 10 000 novoro\u0111en\u010dadi diljem svijeta. Tijekom obilje\u017eavanja&nbsp;<strong>Mjeseca svjesnosti o spinalnoj mi\u0161i\u0107noj atrofiji (SMA)<\/strong>&nbsp;poja\u010dano se nastoji podi\u0107i razina svijesti javnosti o SMA, njenim obilje\u017ejima i specifi\u010dnostima te upoznati \u017eivot osoba sa SMA.<\/p>\n\n\n\n<p>Kroz mjesec koji je pred nama, SDDH pokre\u0107e i sudjeluje u kampanjama podizanja svijesti \u010diji su klju\u010dni ciljevi:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>educirati i informirati javnosti o simptomima, dijagnozi i lije\u010denju SMA,<\/li>\n\n\n\n<li>pru\u017eiti podr\u0161ku osobama s SMA i njihovim obiteljima, isti\u010du\u0107i va\u017enost emocionalne, prakti\u010dne i stru\u010dne podr\u0161ke,<\/li>\n\n\n\n<li>podr\u017eati i promicati istra\u017eivanja koja tra\u017ee u\u010dinkovite tretmane, i u kona\u010dnici, lije\u010denja SMA s naglaskom na pobolj\u0161anje kvalitete \u017eivota osoba,<\/li>\n\n\n\n<li>zagovarati i potaknuti politike invaliditeta koje pobolj\u0161avaju kvalitetu \u017eivota osoba s SMA i omogu\u0107uju pristup sveobuhvatnoj skrbi.<\/li>\n<\/ul>\n\n\n\n<p>SMA poga\u0111a osobe svih dobnih skupina, a prema stupnju te\u017eine i vremenu javljanja simptoma dijeli se na \u010detiri tipa.\u00a0Zbog op\u0107e slabosti mi\u0161i\u0107a javlja se nemogu\u0107nost samostalnog hoda i kretanja, a poreme\u0107aj motori\u010dkih funkcija neminovno dovodi do razvoja kontraktura, deformiteta kralje\u017enice i pove\u0107anog rizika za frakture uslijed osteopenije.<\/p>\n\n\n\n<p>\u00a0Zbog slabosti di\u0161nih mi\u0161i\u0107a nastaju respiratorne komplikacije kao \u0161to su neu\u010dinkovit ka\u0161alj, hipoventilacija za vrijeme spavanja i ponavljaju\u0107e infekcije koje su ujedno i glavni uzrok mortaliteta i morbiditeta osoba sa SMA. Slabost mi\u0161i\u0107a uzrokovana poreme\u0107ajem neuralnih funkcija\u00a0dovodi i do te\u0161ko\u0107a u prehrani te gastroenterolo\u0161kih manifestacija bolesti. Ote\u017eano gutanje, gastrointestinalna disfunkcija, te gastroezofagealni refluks u\u010destali su problemi kao i pove\u0107an rizik od aspiracije hrane i aspiracijske upale plu\u0107a.<\/p>\n\n\n\n<p>Iskustva osoba s SMA, u\u010dinci lije\u010denja koji doprinose pobolj\u0161anju kvalitete \u017eivota pru\u017eaju svima optimizam. Upoznavaju\u0107i svakodnevicu kroz osobne pri\u010de imamo priliku bolje razumjeti njihove izazove i potrebe.<\/p>\n\n\n\n<p>Obilje\u017eavanje Mjeseca svjesnosti o SMA u kolovozu pru\u017ea priliku svima nama da podr\u017eimo osobe s ovom rijetkom bole\u0161\u0107u. Zajedni\u010dkim naporima mo\u017eemo napraviti zna\u010dajnu razliku u \u017eivotima osoba s SMA i njihovih obitelji.&nbsp;<strong>Pridru\u017eite nam se u ovom va\u017enom mjesecu i pomozite \u0161iriti svjesnost o spinalnoj mi\u0161i\u0107noj atrofiji.<\/strong><\/p>\n\n\n\n<p>Sve aktivnosti Kampanje tijekom kolovoza mo\u017eete pratiti na web stranici i dru\u0161tvenim mre\u017eama SDDH.<\/p>","protected":false},"excerpt":{"rendered":"<p>Mjesec&nbsp;kolovoz&nbsp;tradicionalno je posve\u0107en podizanju svijesti o&nbsp;spinalnoj mi\u0161i\u0107noj atrofiji (SMA)&nbsp;&#8211; te\u0161koj, nasljednoj, progresivnoj neuromuskularnoj bolesti koja se o\u010dituje atrofijom mi\u0161i\u0107a i drugim komplikacijama povezanima s bole\u0161\u0107u. SMA je vode\u0107i genetski uzrok smrti u dojen\u010dadi i djece, a svake godine pogodi 1 od 10 000 novoro\u0111en\u010dadi diljem svijeta. Tijekom obilje\u017eavanja&nbsp;Mjeseca svjesnosti o spinalnoj mi\u0161i\u0107noj atrofiji (SMA)&nbsp;poja\u010dano se [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":11942,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"elementor_theme","format":"standard","meta":{"footnotes":""},"categories":[16],"tags":[70,105],"class_list":["post-11941","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sddh-vijesti","tag-distrofija","tag-razvojna-suradnja"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Kolovoz - Mjesec svjesnosti o SMA - SDDH<\/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:\/\/hl-dizajn.hr\/en\/kolovoz-mjesec-svjesnosti-o-sma\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kolovoz - Mjesec svjesnosti o SMA - SDDH\" \/>\n<meta property=\"og:description\" content=\"Mjesec&nbsp;kolovoz&nbsp;tradicionalno je posve\u0107en podizanju svijesti o&nbsp;spinalnoj mi\u0161i\u0107noj atrofiji (SMA)&nbsp;&#8211; te\u0161koj, nasljednoj, progresivnoj neuromuskularnoj bolesti koja se o\u010dituje atrofijom mi\u0161i\u0107a i drugim komplikacijama povezanima s bole\u0161\u0107u. SMA je vode\u0107i genetski uzrok smrti u dojen\u010dadi i djece, a svake godine pogodi 1 od 10 000 novoro\u0111en\u010dadi diljem svijeta. 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