{"id":12053,"date":"2024-11-14T18:20:00","date_gmt":"2024-11-14T17:20:00","guid":{"rendered":"https:\/\/hl-dizajn.hr\/?p=12053"},"modified":"2024-12-08T18:21:43","modified_gmt":"2024-12-08T17:21:43","slug":"odrzan-18-hrvatski-skup-osoba-s-neuromuskularnim-bolestima","status":"publish","type":"post","link":"https:\/\/hl-dizajn.hr\/en\/odrzan-18-hrvatski-skup-osoba-s-neuromuskularnim-bolestima\/","title":{"rendered":"Odr\u017ean 18. hrvatski skup osoba s neuromuskularnim bolestima"},"content":{"rendered":"<p class=\"wp-block-paragraph\">U ponedjeljak, 11. studenog 2024., u organizaciji Saveza dru\u0161tava distrofi\u010dara Hrvatske \u2013 SDDH odr\u017ean je&nbsp;<strong>18. hrvatski skup osoba s neuromuskularnim bolestima<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Otvaranje Skupa obilje\u017eile su pozdravne rije\u010di&nbsp;<strong>Marice Miri\u0107<\/strong>, predsjednice SDDH, koje su dale ton doga\u0111aju, nagla\u0161avaju\u0107i va\u017enost okupljanja i razmjene iskustava te podr\u0161ke osobama s mi\u0161i\u0107nom distrofijom i neuromuskularnim bolestima i njihovim obiteljima.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(11).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(11).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Sudionicima se obratila i&nbsp;<strong>Nata\u0161a Tro\u0161t<\/strong>&nbsp;iz tvrtke Biogen Pharma koje je predstavila&nbsp;<strong>mobilnu aplikaciju za vje\u017ebanje<\/strong>&nbsp;namijenjenu osobama sa spinalnom mi\u0161i\u0107nom distrofijom. Aplikacija je besplatna i&nbsp;<strong><a href=\"https:\/\/www.sddh.hr\/savez-drustava-distroficara-hrvatske-aktualnosti-pregled\/biogen-sma-aplikacija-za-vjezbanje\">dostupna na hrvatskom jeziku<\/a><\/strong>, a sadr\u017ei jednostavne vje\u017ebe kod ku\u0107e te podr\u017eava i poti\u010de kontinuiranu tjelesnu aktivnost koja je potrebna za odr\u017eavanje mi\u0161i\u0107ne funkcije.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(19).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(19).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Maja Musta\u010d<\/strong>&nbsp;iz Nacionalne zaklade za razvoj civilnoga dru\u0161tva govorila je o izazovima s kojima su se udruge osoba s invaliditetom suo\u010davaju posljednjih godina, kao i o postignu\u0107ima u pru\u017eanju podr\u0161ke osobama s invaliditetom. Izrazila je optimizam glede budu\u0107ih projekata i pohvalila rad SDDH i doprinos&nbsp;osobama s MD i NMB, naglasiv\u0161i koliko je va\u017eno pru\u017eiti kontinuiranu podr\u0161ku osobama s MD i NMB i njihovim obiteljima kroz razne inicijative i aktivnosti.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(24).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(24).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Temu \u201e<em>Kako se pona\u0161ati u kriznim situacijama i \u0161to mora sadr\u017eavati ruksak u slu\u010daju kriza<\/em>\u201c predstavila je&nbsp;<strong>Marica Miri\u0107<\/strong>&nbsp;koja je objasnila strategije za suo\u010davanje s razli\u010ditim vrstama kriznih situacija, uklju\u010duju\u0107i prirodne katastrofe, iznenadne nesre\u0107e i hitne evakuacije. U svom izlaganju naglasila je va\u017enost pravovremenog planiranja i pravilnog pakiranja osnovnog ruksaka za hitne slu\u010dajeve, koji bi trebao sadr\u017eavati klju\u010dne medicinske potrep\u0161tine, kao \u0161to su antiseptici, zavoji i lijekovi, kao i ostalu opremu nu\u017enu za pre\u017eivljavanje, poput svjetiljke, vode, hrane, pokriva\u010da i dokumenata.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(32).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(32).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Grupe podr\u0161ke<\/strong>, njihov zna\u010daj i utjecaj na osobe koje u njima sudjeluju, pojasnila je&nbsp;<strong>Vanda Kos Jerkovi\u0107<\/strong>&nbsp;iz Centra za rehabilitaciju Zagreb, nagla\u0161avaju\u0107i kako grupe podr\u0161ke omogu\u0107uju sudionicima ne samo osje\u0107aj pripadnosti i emocionalnu podr\u0161ku, ve\u0107 i priliku za razmjenu iskustava, \u0161to dodatno doprinosi njihovoj samosvijesti i lak\u0161em prevladavanju svakodnevnih izazova. Kroz izlaganje je sudionicima predstavila i temu&nbsp;<strong>psihoterapije pokretom i plesom<\/strong>&nbsp;kao kreativnog procesa pri kojem dolazi do emotivne, kognitivne, fizi\u010dke i socijalne integracije pojedinca, a s obzirom na to da kineziolo\u0161ka percepcija uklju\u010duje proprioceptivni ili posturalni senzibilitet koji je stimuliran stavovima i pokretima psihoterapija pokretom i plesom uz fizikalnu terapiju mo\u017ee doprinijeti otpu\u0161tanju napetosti te pru\u017eiti osje\u0107aj kontrole nad osobnim prostorom.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(46).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(46).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Radna terapeutkinja&nbsp;<strong>Matea Videk<\/strong>&nbsp;iz KBC-a Split i Udruge Spektar odr\u017eala je predavanje pod nazivom \u201e<em>Terapijsko hranjenje kod osoba s mi\u0161i\u0107nom distrofijom<\/em>\u201c. Tijekom predavanja, objasnila je koncept terapijskog hranjenja te klju\u010dne razlike izme\u0111u hranjenja i jedenja. Detaljno je prikazala faze gutanja, vje\u017ebe i orofacijalne masa\u017ee, upotrebu alata talk tools, kao i prilago\u0111eni pribor za hranjenje te asistivnu tehnologiju koja olak\u0161ava proces hranjenja.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(79).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(79).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Mira Kataleni\u0107<\/strong>&nbsp;i&nbsp;&nbsp;<strong>Lana Glavan<\/strong>&nbsp;iz Hrvatske udruge za \u0161kolovanje pasa vodi\u010da i mobilitet predstavile su&nbsp;<strong>utjecaj pasa pomaga\u010da na kvalitetu \u017eivota osoba s MD i NMB<\/strong>&nbsp;prikazav\u0161i primjere rada pasa pomaga\u010da s osobama razli\u010ditih invaliditeta uklju\u010duju\u0107i kod mladi\u0107a sa spinalnom mi\u0161i\u0107nom atrofijom. Istaknule su brojne pozitivne u\u010dinke pasa pomaga\u010da na psiholo\u0161ku i fizi\u010dku dobrobit korisnika, naglasiv\u0161i kako psi olak\u0161avaju svakodnevne zadatke i pru\u017eaju dragocjenu emocionalnu podr\u0161ku. Tako\u0111er, predstavile su zakonski okvir pri \u010demu su naglasile da se osoba, u svim slu\u010dajevima diskriminacije kao npr. odbijanja prijevoza, mo\u017ee i treba pozvati na Zakon o kori\u0161tenju pasa pomaga\u010da &nbsp;kojim je reguliran status korisnika pasa pomaga\u010da i terapijskih pasa.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(123).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(123).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Psihologinja SDDH,&nbsp;<strong>Dragana Budimir<\/strong>, odr\u017eala je radionicu pod nazivom \u201e<em>Jesmo li mentalno fit?<\/em>\u201c, u kojoj je predstavila sa\u017eetak tema koje su obra\u0111ene kroz psiholo\u0161ke radionice dvogodi\u0161njeg programa SDDH za ja\u010danje pozitivnog mentalnog zdravlja i socijalne podr\u0161ke za osobe s mi\u0161i\u0107nom distrofijom, a zatim su sudionici ispunjavali upitnik. Ispunjavanjem&nbsp;<strong>anonimnog upitnika<\/strong>, sudionici su mogli&nbsp;<strong>preispitati vlastito mentalno zdravlje<\/strong>, bolje ga razumjeti i osvijestiti podru\u010dja na kojima je potrebno dodatno raditi za pobolj\u0161anje osobne dobrobiti. Rezultati \u0107e omogu\u0107iti uvid u emocionalnu otpornost, vje\u0161tine suo\u010davanja sa stresom i kvalitetu podr\u0161ke te prikazati koji aspekti mentalnog zdravlja zahtijevaju vi\u0161e pa\u017enje.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(146).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(146).JPG\" alt=\"\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Tijekom cjelokupnog trajanja sudionici su komentarima, iskustvima, pitanjima i sugestijama aktivno pridonosili radu Skupa, a na samom kraju&nbsp;predsjednica SDDH je, isti\u010du\u0107i va\u017enost zajedni\u0161tva i podr\u0161ke me\u0111u osobama s MD i NMB, iznijela zaklju\u010dke i zavr\u0161ne rije\u010di te se zahvalila svim predava\u010dima i sudionicima.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><a href=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(65).JPG\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" src=\"https:\/\/www.sddh.hr\/userfiles\/images\/18.%20skup%20osoba%20s%20NMB\/Skup_18_NMB-resized%20(65).JPG\" alt=\"\"\/><\/a><\/figure>","protected":false},"excerpt":{"rendered":"<p>U ponedjeljak, 11. studenog 2024., u organizaciji Saveza dru\u0161tava distrofi\u010dara Hrvatske \u2013 SDDH odr\u017ean je&nbsp;18. hrvatski skup osoba s neuromuskularnim bolestima. Otvaranje Skupa obilje\u017eile su pozdravne rije\u010di&nbsp;Marice Miri\u0107, predsjednice SDDH, koje su dale ton doga\u0111aju, nagla\u0161avaju\u0107i va\u017enost okupljanja i razmjene iskustava te podr\u0161ke osobama s mi\u0161i\u0107nom distrofijom i neuromuskularnim bolestima i njihovim obiteljima. Sudionicima se [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":12054,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"elementor_theme","format":"standard","meta":{"footnotes":""},"categories":[16],"tags":[68],"class_list":["post-12053","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sddh-vijesti","tag-sustavna-podrska"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Odr\u017ean 18. hrvatski skup osoba s neuromuskularnim bolestima - 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\/odrzan-18-hrvatski-skup-osoba-s-neuromuskularnim-bolestima\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Odr\u017ean 18. hrvatski skup osoba s neuromuskularnim bolestima - SDDH\" \/>\n<meta property=\"og:description\" content=\"U ponedjeljak, 11. studenog 2024., u organizaciji Saveza dru\u0161tava distrofi\u010dara Hrvatske \u2013 SDDH odr\u017ean je&nbsp;18. hrvatski skup osoba s neuromuskularnim bolestima. Otvaranje Skupa obilje\u017eile su pozdravne rije\u010di&nbsp;Marice Miri\u0107, predsjednice SDDH, koje su dale ton doga\u0111aju, nagla\u0161avaju\u0107i va\u017enost okupljanja i razmjene iskustava te podr\u0161ke osobama s mi\u0161i\u0107nom distrofijom i neuromuskularnim bolestima i njihovim obiteljima. 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