{"id":10445,"date":"2020-06-02T10:20:57","date_gmt":"2020-06-02T10:20:57","guid":{"rendered":"https:\/\/jurmed.ro\/medici\/?p=10445"},"modified":"2020-06-02T10:27:19","modified_gmt":"2020-06-02T10:27:19","slug":"ziua-mondiala-a-sclerozei-multiple","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/medici\/ziua-mondiala-a-sclerozei-multiple\/","title":{"rendered":"Ziua Mondial\u0103 a Sclerozei Multiple"},"content":{"rendered":"<p style=\"text-align: justify\"><em>Anul acesta, Ziua Mondial\u0103 a Sclerozei Multiple (World MS Day), 30 mai 2020, d\u0103r\u00e2m\u0103 barierele sociale, care \u00eei determin\u0103 pe cei afeca\u021bi de scleroza multipl\u0103 s\u0103 se simt\u0103 singuri \u0219i izola\u021bi de societate, prin campania <strong>#Conectare<\/strong>. <strong>M\u0103 conectez. Ne conect\u0103m.<\/strong><\/em><\/p>\n<p style=\"text-align: justify\">\u00cen acest moment oamenii simt c\u0103 au pierdut leg\u0103tura dintre ei. Ne-am distan\u021bat de familia noastr\u0103, de prietenii no\u0219tri \u0219i de comunit\u0103\u021bile noastre. Nu putem accesa lumea de dincolo de u\u0219a casei la fel ca \u00eenainte. Pentru persoanele care sufer\u0103 de scleroz\u0103 multipl\u0103 (SM), aceasta nu este o realitate nou\u0103. Mul\u021bi oameni din comunitatea SM s-au sim\u021bit singuri \u0219i izola\u021bi cu mult \u00eenainte de COVID-19 \u0219i continu\u0103 astfel \u00een aceste vremuri f\u0103r\u0103 precedent.<\/p>\n<p style=\"text-align: justify\">Anul acesta de Ziua Mondial\u0103 a Sclerozei Multiple (30 mai) Asocia\u021bia Pacien\u021bilor cu Afec\u021biuni Neurodegenerative (APAN Romania) \u00ee\u0219i une\u0219te for\u021bele cu mi\u0219carea de la nivel interna\u021bional realizat\u0103 de Federa\u021bia Interna\u021bional\u0103 pentru SM (MSIF) pentru a opri aceast\u0103 deconectare. Oamenii afecta\u021bi de SM \u0219i cei din jurul lor sunt \u00eendemna\u021bi s\u0103 se conecteze \u0219i s\u0103 celebreze conectarea: conectarea cu comunitatea, auto-conectarea \u0219i conectarea la \u00eengrijire de calitate.<\/p>\n<p style=\"text-align: justify\"><a href=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-full wp-image-10447\" src=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-1.jpg\" alt=\"\" width=\"238\" height=\"167\" \/><\/a>Pe parcursul \u00eentregii luni mai, APAN Romania a organizat webinarii de specialitate (SM \u0219i Covid-19, SM &#8211; de la diagnostic la progresie, stil de via\u021b\u0103 \u0219i nutri\u021bie), \u00eent\u00e2lniri online s\u0103pt\u0103m\u00e2nale de suport psihologic cu sprijinul voluntarilor de la Institutul Psychos sau de comunicare, a realizat materiale video de suport \u0219i o pagina FB dedicat\u0103, pentru realizarea exerci\u021biilor de kinetoterapie de acas\u0103.<\/p>\n<p style=\"text-align: justify\">Asocia\u021bia a organizat un concurs de art\u0103 plastic\u0103\u00a0(pictur\u0103, desen, acuarel\u0103, colaj, pastel)\u00a0\u0219i fotografie pentru a celebra solidaritatea, creativitatea \u0219i conectarea. Concursul s-a adresat persoanelor adulte, arti\u0219ti profesioni\u0219ti sau amatori, dar \u0219i copiilor. Lucr\u0103rile de o valoare excep\u021bional\u0103 au fost \u00eenso\u021bite de mesaje cu adev\u0103rat emo\u021bionante. Albumul cu peste 200 de lucr\u0103ri se g\u0103se\u0219te pe pagina de FB a asocia\u021biei utiliz\u00e2nd hashtagul #Conectare.<\/p>\n<p style=\"text-align: justify\">Un material video de suport a fost realizat cu aceast\u0103 ocazie cu sprijinul Dash Film, o propunere creativ\u0103 realizat\u0103 \u00een condi\u021bii de distan\u021bare social\u0103 \u0219i limit\u0103ri, dar o solu\u021bie care arat\u0103 importan\u021ba conect\u0103rii \u0219i promoveaz\u0103 campionii SM, persoane care s-au adaptat rapid noilor provoc\u0103ri \u0219i au obiective de via\u021b\u0103 de succes.<\/p>\n<p style=\"text-align: justify\"><em>\u201cM\u0103 conectez. Ne conect\u0103m. Vorbim despre afec\u021biune, vorbim despre noi. \u0218tiu c\u0103 este cineva care simte ca mine \u0219i care m\u0103 ascult\u0103. Suntem mul\u021bi. Diferi\u021bi, dar totu\u0219i at\u00e2t de asem\u0103n\u0103tori. Ast\u0103zi noi ne oferim suport nou\u0103. Ast\u0103zi m-am transformat, nu mai sunt bolnavul cu scleroz\u0103 multipl\u0103, sunt Tudor. Mi-am reluat activit\u0103\u021bile preferate, adaptate la nevoile mele de acum, \u00eempreun\u0103 cu noi prieteni. Visurile continu\u0103. Am \u00eenv\u0103\u021bat ce \u00eenseamn\u0103 conectarea \u0219i, poate mai important, c\u00e2t de mult poate aceasta s\u0103 \u00ee\u021bi schimbe perspectiva. To\u021bi avem nevoie s\u0103 g\u0103sim puterea de a-i \u00eent\u00e2lni pe ceilal\u021bi \u0219i ce \u00eenseamn\u0103 ea pentru noi\u201d,<\/em> Tudor<\/p>\n<p style=\"text-align: justify\">Ziua Mondial\u0103 a Sclerozei Multiple este o oportunitate de a milita pentru acces la tratamente, servicii \u0219i suport, de a celebra re\u021bele de asisten\u021b\u0103 din Centrele de SM, dar \u0219i de a solicita schimb\u0103ri \u00een sistemul de s\u0103n\u0103tate.<\/p>\n<p style=\"text-align: justify\"><strong>De ce este at\u00e2t de important\u0103 conectarea pentru persoanele care tr\u0103iesc cu SM:<\/strong><\/p>\n<ul style=\"text-align: justify\">\n<li><strong>Barierele sociale \u0219i stigmatizarea<\/strong> sunt reale, iar acestea pot face ca oamenii afecta\u021bi de SM s\u0103 se simt\u0103 singuri \u0219i izola\u021bi \u2013 conexiunile interumane pot fi o modalitate importat\u0103 de a d\u0103r\u00e2ma aceste bariere \u0219i de a \u00eembun\u0103t\u0103\u021bi calitatea vie\u021bii celor cu SM<\/li>\n<li><strong>Construirea unei comunit\u0103\u021bi<\/strong> care sus\u021bine \u0219i aduce laolalt\u0103 oameni afecta\u021bi de SM reprezint\u0103 nucleul activit\u0103\u021bii APAN, un rol crucial \u00een conectarea oamenilor care au sau care sunt afecta\u021bi de SM.<\/li>\n<li><strong>Promovarea auto-\u00eengrijirii \u0219i a traiului s\u0103n\u0103tos pentru oamenii cu SM<\/strong> \u00eei ajut\u0103 pe ace\u0219tia s\u0103 aib\u0103 o perspectiv\u0103 pozitiv\u0103 \u0219i, \u00een multe situa\u021bii, s\u0103 \u00ee\u0219i gestioneze simptomele.<\/li>\n<li><strong>Conectarea cu autorit\u0103\u021bile pentru a milita pentru<\/strong> primirea unor servicii \u0219i tratament mai bun este foarte important\u0103 pentru cei 9.000 de oameni care tr\u0103iesc cu SM, <strong>\u00een Rom\u00e2nia<\/strong>.<\/li>\n<\/ul>\n<p style=\"text-align: justify\"><em>\u201cNu m-am sim\u021bit niciodat\u0103 at\u00e2t de singur ca atunci c\u00e2nd am primit diagnosticul. M-am sim\u021bit abandonat, \u00eengrozit \u0219i pietrificat. Totul s-a destabilizat. Via\u021ba s-a \u00eentors cu susul \u00een jos. Brusc, nu \u0219tii ce va aduce ziua de m\u00e2ine\u201d, Eduard<\/em><\/p>\n<p style=\"text-align: justify\">\u201e<em>\u0218tiam foarte bine cum s\u0103 ascund ce simt \u00een zilele mele cele mai negre, pl\u0103nuiam cum s\u0103 m\u0103 elimin din ecua\u021bie. P\u00e2n\u0103 c\u00e2nd, \u00eentr-o zi, m-a izbit faptul c\u0103 eu nu m-am schimbat. Sunt \u00een continuare creativ\u0103, \u00eemi place \u00een continuare aceea\u0219i muzic\u0103, \u00eenc\u0103 r\u00e2d la acelea\u0219i glume, \u00eenc\u0103 \u00eemi place s\u0103 m\u0103 \u00eent\u00e2lnesc cu prietenele. Iar apoi, la fel de rapid cum m-a cuprins, depresia mea s-a \u00eentors \u0219i a plecat. M\u0103 simt cel mai conectat\u0103 atunci c\u00e2nd comunic cu al\u021bi membri ai asocia\u00edei cu aceea\u0219i afec\u021b\u00edune, ajut\u00e2nd al\u021bi oameni cu SM s\u0103 se conecteze. Ajut\u00e2ndu-i pe al\u021bii m\u0103 ajut pe mine \u0219i simt c\u0103 sunt preg\u0103tit\u0103 s\u0103 \u00eencep s\u0103 tr\u0103iesc din nou\u201d, Cristina<\/em><\/p>\n<p style=\"text-align: justify\"><em>\u201cLa c\u00e2\u021biva ani de la primirea diagnosticului, singurul lucru care nu s-a schimbat este dragostea mea pentru art\u0103. Sunt recunosc\u0103toare s\u0103 pot \u00eenc\u0103 r\u0103sp\u00e2ndi bucuria adus\u0103 de art\u0103 tuturor; celor tineri sau b\u0103tr\u00e2ni, bolnavi sau s\u0103n\u0103to\u0219i. Sunt bucuroas\u0103 pentru concursul de art\u0103 plastic\u0103 \u0219i fotografie, #Conectare, organizat de APAN anul acesta cu aceast\u0103 ocazie. A ajutat la con\u0219tientizarea acestei afec\u021biuni \u0219i a puterii \u0219i creativit\u0103\u021bii care st\u0103 \u00een fiecare dintre noi. Ne-am informat despre SM \u0219i am inspirat pe mul\u021bi s\u0103 continue s\u0103 tr\u0103iasc\u0103!\u201d, Maria<\/em><\/p>\n<p style=\"text-align: justify\">\u00cen fiecare an, pe 30 mai, comunitatea de SM se adun\u0103 pentru a \u00eemp\u0103rt\u0103\u0219i pove\u0219ti, a cre\u0219te nivelul de con\u0219tientizare \u0219i a milita pentru to\u021bi cei afecta\u021bi de SM. Pentru mai multe informa\u021bii despre cum v\u0103 pute\u021bi implica, vizita\u021bi website-ul <a href=\"http:\/\/www.afectiuni-neurodegenerative.ro\">www.afectiuni-neurodegenerative.ro<\/a><strong>\u00a0<\/strong><\/p>\n<p style=\"text-align: justify\">Materiale<\/p>\n<ul style=\"text-align: justify\">\n<li>Lucr\u0103rile \u00eenscrise la concursul de art\u0103 plastic\u0103 \u0219i fotografie #Conectare sunt disponibile <a href=\"https:\/\/www.facebook.com\/APANRomania\/media_set\/?set=a.1195499490797658\">aici<\/a>.<\/li>\n<li>Filmul campaniei APAN de la nivel na\u021bional #Conectare poate fi vizionat online \u00eencep\u00e2nd cu 30 mai.<\/li>\n<li>Filmul campaniei MSIF de la nivel interna\u021bional #MyMSConnections poate fi vizionat <a href=\"https:\/\/www.youtube.com\/watch?v=RU2391VOFRA&amp;feature=youtu.be\">aici<\/a>.<\/li>\n<\/ul>\n<p style=\"text-align: justify\">Sponsori campanie: Merck, Roche, Janssen, Alvogen, Teva, Sanofi-Genzyme.<\/p>\n<p style=\"text-align: justify\"><strong><a href=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-2-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-medium wp-image-10452\" src=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-2-1-300x100.jpg\" alt=\"\" width=\"300\" height=\"100\" srcset=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-2-1-300x100.jpg 300w, https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2020\/06\/ziua-mondiala-a-sclerozei-2-1.jpg 600w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>Despre Ziua Mondial\u0103 a SM<\/strong><\/p>\n<p style=\"text-align: justify\">Ziua Mondial\u0103 a SM a fost \u00eenfiin\u021bat\u0103 de Federa\u021bia Interna\u021bional\u0103 pentru SM (MSIF) \u0219i organiza\u021biile sale membre \u00een 2009, pentru a aduce comunitatea interna\u021bional\u0103 SM \u00eempren\u0103 cu scopul de a informa \u0219i a face campanie pentru \u00eembun\u0103t\u0103\u021birea calit\u0103\u021bii vie\u021bii cu SM. Ziua Mondial\u0103 a SM este stabilit\u0103, oficial, pe 30 mai, \u00een fiecare an. Evenimente \u0219i campanii se desf\u0103\u0219oar\u0103 pe toat\u0103 perioada lunii mai \u0219i la \u00eenceputul lunii iunie: <a href=\"https:\/\/worldmsday.org\/tools\/\">https:\/\/worldmsday.org\/tools\/<\/a><\/p>\n<p style=\"text-align: justify\"><strong>Asocia\u021bia Pacien\u021bilor cu Afec\u021biuni Neurodegenerative<\/strong><\/p>\n<p style=\"text-align: justify\">APAN Rom\u00e2nia reprezint\u0103 \u0219i ap\u0103r\u0103 drepturile persoanelor cu afec\u021biuni neurodegenerative \u00een \u021bara noastr\u0103. Misiunea asocia\u021biei este s\u0103 ofere acces la informa\u021bii inovatoare, s\u0103 educe toate p\u0103r\u021bile interesate cu privire la nevoile persoanelor cu afec\u021biuni neurodegenerative \u0219i s\u0103 \u00eembun\u0103t\u0103\u021beasc\u0103 \/ faciliteze accesul echitabil la tratament \u0219i terapii de \u00eenalt\u0103 calitate, pentru \u00eembun\u0103t\u0103\u021birea calit\u0103\u021bii vie\u021bii. APAN Rom\u00e2nia \u00ee\u0219i dore\u0219te s\u0103 devin\u0103 principala voce a persoanelor cu afec\u021biuni neurodegenerative din Rom\u00e2nia \u0219i s\u0103 se asigure c\u0103 pacien\u021bii au o voce puternic\u0103 \u00een stabilirea propriilor obiective \u0219i priorit\u0103\u021bi.<\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.afectiuni-neurodegenerative.ro\">www.afectiuni-neurodegenerative.ro<\/a><\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.facebook.com\/APANRomania\">www.facebook.com\/APANRomania<\/a><\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.facebook.com\/NeuroReabilitare\">www.facebook.com\/NeuroReabilitare<\/a><\/p>\n<p style=\"text-align: justify\"><em><strong>Despre scleroza multipl\u0103 (SM)<\/strong><\/em><\/p>\n<p style=\"text-align: justify\"><em>Scleroza multipl\u0103 (SM) este una dintre cele mai frecvente tulbur\u0103ri neurologice care cauzeaz\u0103 dizabilit\u0103\u021bi la adul\u021bii tineri.<\/em><\/p>\n<p style=\"text-align: justify\"><em>Exist\u0103 cel pu\u021bin 2,3 milioane de oameni care sufer\u0103 de SM la nivel mondial \u0219i 9.000 la nivel na\u021bional. Este probabil ca alte sute de mii de persoane s\u0103 r\u0103m\u00e2n\u0103 nediagnosticate \u0219i multe vie\u021bi s\u0103 fie afectate indirect, \u00eentruc\u00e2t \u00eengrijesc o persoan\u0103 cu SM. Majoritatea persoanelor cu SM sunt diagnosticate \u00eentre 20 \u0219i 40 de ani, fiind cu aproximativ de dou\u0103 ori mai multe femei diagnosticate dec\u00e2t b\u0103rba\u021bi.<\/em><\/p>\n<p style=\"text-align: justify\"><em>Nu se \u0219tie \u00eenc\u0103 ce anume cauzeaz\u0103 SM \u0219i \u00eenc\u0103 nu exist\u0103 un leac, \u00eens\u0103 exist\u0103 o palet\u0103 larg\u0103 de tratamente disponibile care pot ajuta anumite forme de SM \u0219i sunt multe op\u021biuni pentru \u00eembun\u0103t\u0103\u021birea \u0219i gestionarea simptomelor.<\/em><\/p>\n<p style=\"text-align: justify\"><em>Nu exist\u0103 un model pre-stabilit \u00een ce prive\u0219te gravitatea SM unei persoane, traseul pe care \u00eel urmeaz\u0103 \u0219i simptomele pe care le manifest\u0103. Fiecare persoan\u0103 este diferit\u0103. Simptomele pot include vedere \u00eence\u021bo\u0219at\u0103, lipsa for\u021bei \u00een membre, senza\u021bii de furnic\u0103turi, instabilitate, probleme de memorie \u0219i oboseal\u0103 etc.<\/em><\/p>\n<p style=\"text-align: justify\"><em>Pentru unele persoane, SM este caracterizat\u0103 de perioade de dec\u0103dere \u0219i remisie (se amelioreaz\u0103 o perioad\u0103, iar apoi atac\u0103 din c\u00e2nd \u00een c\u00e2nd), \u00een timp ce pentru alte persoane are un tipar progresiv (se agraveaz\u0103 treptat, \u00een timp). Unele persoane se pot sim\u021bi \u0219i pot ap\u0103rea s\u0103n\u0103toase mul\u021bi ani dup\u0103 diagnostic, \u00een timp ce al\u021bii ajung rapid la dizabilitate sever\u0103.<\/em><\/p>\n<p style=\"text-align: justify\"><em>SM face ca via\u021ba s\u0103 fie imprevizibil\u0103 pentru toat\u0103 lumea. Pentru a afla mai multe despre SM, lua\u021bi leg\u0103tura cu organiza\u021bia APAN <a href=\"http:\/\/www.afectiuni-neurodegenerative.ro\">www.afectiuni-neurodegenerative.ro<\/a><\/em><\/p>\n<p style=\"text-align: justify\">\n","protected":false},"excerpt":{"rendered":"<p>Anul acesta, Ziua Mondial\u0103 a Sclerozei Multiple (World MS Day), 30 mai 2020, d\u0103r\u00e2m\u0103 barierele sociale, care \u00eei determin\u0103 pe cei afeca\u021bi de scleroza multipl\u0103 s\u0103 se simt\u0103 singuri \u0219i [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":10450,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-10445","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - 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