{"id":12071,"date":"2021-05-28T20:55:15","date_gmt":"2021-05-28T20:55:15","guid":{"rendered":"https:\/\/jurmed.ro\/medici\/?p=12071"},"modified":"2021-05-28T20:55:15","modified_gmt":"2021-05-28T20:55:15","slug":"ziua-mondiala-a-sclerozei-multiple-realizari-si-provocari-pentru-cei-9000-de-pacienti-din-romania","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/medici\/ziua-mondiala-a-sclerozei-multiple-realizari-si-provocari-pentru-cei-9000-de-pacienti-din-romania\/","title":{"rendered":"Ziua Mondiala a Sclerozei Multiple \u2013 realizari si provocari pentru cei 9000 de pacienti din Romania"},"content":{"rendered":"<p><strong>Asociatia Pacientilor cu Afectiuni Neurodegenerative (APAN Romania), membra a Platformei Europene pentru Scleroza Multipla, a organizat azi un eveniment dedicat Zilei Mondiale a Sclerozei Multiple, zi celebrata in fiecare an pe 30 mai. <\/strong><strong>Tema campaniei World MS Day 2021 este \u201d#Conectare. M<\/strong><strong>a<\/strong><strong> conectez. Ne conect<\/strong><strong>a<\/strong><strong>m.\u201d<\/strong><\/p>\n<p><a href=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2021\/05\/Cover_MSDay2021_1024.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-12072\" src=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2021\/05\/Cover_MSDay2021_1024-300x116.jpg\" alt=\"\" width=\"300\" height=\"116\" srcset=\"https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2021\/05\/Cover_MSDay2021_1024-300x116.jpg 300w, https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2021\/05\/Cover_MSDay2021_1024-768x296.jpg 768w, https:\/\/jurmed.ro\/medici\/wp-content\/uploads\/sites\/2\/2021\/05\/Cover_MSDay2021_1024.jpg 1024w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p>La evenimentul care a avut loc in online, au participat medici renumiti dar si cei mai importanti reprezentanti ai autoritatilor din Sanatate, de la Ministerul Sanatatii, Casa Nationala de Asigurari de Sanatate, comisiile pentru Sanatate ale celor doua Camere\u00a0 din Parlamentul Romaniei si de la Agentia Nationala a Medicamentului si a Dispozitivelor Medicale din Romania.<\/p>\n<p>In centrul discutiilor care au avut loc s-a aflat problematica pacientilor cu scleroza multipla (SM) dupa un an si jumatate de pandemie dar si provocarile cu care se confrunta acestia in general, de la diagnosticare si pe intreg parcursul tratamentului acestei afectiuni neurologice degenerative. Lucruri bune, imbucuratoare, lucruri mai putin bune si lucruri care inca isi asteapta rezolvarea.<\/p>\n<p><strong>9.000 de pacienti cu scleroza multipla, in Romania<\/strong><\/p>\n<p>Potrivit celor mai recente date statistice existente, <strong>in lume sunt 2,8 milioane de pacienti cu scleroza multipla,<\/strong> dintre care <strong>peste un milion in Europa.<\/strong> Potrivit studiului ReThinkingMS, realizat de European Brain Council in 2019, <strong>in tara noastra exista aproximativ 9000 de persoane afectate de scleroza multipla, <\/strong>din care 70% sunt femei. Diagnosticarea se realizeaza la varste cuprinse intre 20 si 40 ani, ceea ce reprezinta cea mai des intalnita invaliditate non-traumatica la adultul tanar. Simptomele se manifesta diferit de la o persoana la alta, de la o zi la alta, provocarile au impact asupra persoanei, familiei, vietii sociale sau la locul de munca. 87% dintre persoanele cu scleroza multipla detin un certificat de handicap.<\/p>\n<p><strong>Urgen<\/strong><strong>t<\/strong><strong>a nr. 1: Registrul Na<\/strong><strong>t<\/strong><strong>ional al pacien<\/strong><strong>t<\/strong><strong>ilor cu SM<\/strong><\/p>\n<p><strong>Cristina Vl<\/strong><strong>a<\/strong><strong>d<\/strong><strong>a<\/strong><strong>u, vicepre<\/strong><strong>s<\/strong><strong>edinte APAN Rom<\/strong><strong>a<\/strong><strong>nia<\/strong><strong>, <\/strong>a enumerat lucrurile bune care s-au intamplat de anul trecut pana in prezent, chiar si in conditii de pandemie, respectiv accesul pacientilor la patru terapii inovatoare, schimbarea criteriilor de acreditare si aparitia a noi Centre de tratament pentru bolnavii cu aceasta patologie (la Brasov, Galati si, in curand, la Ploiesti), posibilitatea depunerii online a documentatiei pentru obtinerea certificatului de handicap si aparitia oportunitatilor de telemunca.<\/p>\n<p>Cu toate acestea, pacientii cu scleroza multipla au inca multe nevoi, nevoi pe care APAN le-a identificat ca fiind necesitatea existentei unui Registru National functional al pacientilor cu scleroza multipla, aparitia de noi Centre de tratament (in special in judete deficitare precum Suceava si Arges), cu personal pregatit, si a accesului la tratamente, servicii medicale si de neurorecuperare.<em>&#8222;Am trecut de peste un an provocator dar, <\/em><em>i<\/em><em>mpreun<\/em><em>a<\/em><em>, comunitatea de SM continu<\/em><em>a<\/em><em> s<\/em><em>a<\/em><em> demonstreze adaptare <\/em><em>s<\/em><em>i putere.<\/em> Aceast<em>a<\/em><em> Zi Mondial<\/em><em>a<\/em><em> a Sclerozei Multiple este o oportunitate de a milita pentru o <\/em><em>i<\/em><em>ngrijire mai bun<\/em><em>a<\/em><em>, de a vorbi despre telemedicin<\/em><em>a<\/em> <em>s<\/em><em>i teleradiologie <\/em><em>i<\/em><em>n domeniul neurologiei, despre centre noi de SM dar <\/em><em>s<\/em><em>i despre echipe multidisciplinare <\/em><em>s<\/em><em>i dot<\/em><em>a<\/em><em>ri pentru neuroreabilitare.<\/em> <em>S<\/em><em>i nu <\/em><em>i<\/em><em>n ultimul r<\/em><em>a<\/em><em>nd despre acces <\/em><em>i<\/em><em>n timp util la tratamente inovatoare, la un registru de pacien<\/em><em>t<\/em><em>i eficient dar <\/em><em>s<\/em><em>i la suportul <\/em><em>i<\/em><em>ntregii societ<\/em><em>at<\/em><em>ii.<\/em> Anul acesta <em>i<\/em><em>l dedic<\/em><em>a<\/em><em>m conect<\/em><em>a<\/em><em>rii. Conect<\/em><em>a<\/em><em>rii cu propria persoan<\/em><em>a<\/em><em>, cu familia, cu re<\/em><em>t<\/em><em>eaua de asisten<\/em><em>ta<\/em><em>. Sper<\/em><em>a<\/em><em>m <\/em><em>i<\/em><em>ntr-un viitor mai luminos pentru fiecare persoan<\/em><em>a<\/em><em> cu SM, c<\/em><em>a<\/em><em>ci <\/em><em>s<\/em><em>tim c<\/em><em>a<\/em> <em>i<\/em><em>mpreun<\/em><em>a<\/em><em> suntem mai puternici<\/em><em>&#8222;<\/em>, a declarat Cristina Vladau, vicepresedintele APAN.<\/p>\n<p><strong>O nou<\/strong><strong>a<\/strong><strong> molecul<\/strong><strong>a<\/strong><strong>, o nou<\/strong><strong>a<\/strong> <strong>s<\/strong><strong>ans<\/strong><strong>a<\/strong><\/p>\n<p>Prezenta la eveniment, doamna <strong>conf. dr. Cristina Tiu, medic neurolog si presedinte al Societatii Romane de Neurologie,<\/strong> a subliniat, de asemenea, necesitatea infiintarii de noi Centre de tratament pentru pacientii cu scleroza multipla dar si a alocarii unor spatii mai mari pentru cele deja existente, care ar fi ideal sa devina multidisciplinare, cu specialisti dedicati.<\/p>\n<p><em>&#8222;Extinderea numarului de centre dedicate pacientilor cu scleroza multipla ar trebui dublata si de cresterea dotarilor si a spatiului de care dispune fiecare, astfel incat sa incepem sa ne apropiem de conceptul european al unui astfel de Centru de SM&#8221;<\/em>, a punctat conf. dr. Cristina Tiu.<\/p>\n<p>Vestea buna pe care presedintele Societatii Romane de Neurologie a adus-o pacientilor este aceea ca va fi aprobata o noua molecula pentru tratamentul sclerozei multiple secundar progresive, si ca la inceputul anului viitor aceasta va putea fi inclusa in arsenalul terapeutic al acestei afectiuni dizabilitante. In afara de acest lucru, avand in vedere evolutia tehnologica si importanta pe care pandemia de COVID-19 ne-a aratat ca o are telemedicina, doamna conf. dr. Cristina Tiu a mai adaugat ca <em>&#8222;suntem intr-un stadiu avansat de dezvoltare a unui proiect care va permite, cu acordul pacientului, stocarea tuturor examinarilor RMN ale fiecarui pacient, astfel incat sa poata fi accesate rapid de medicul examinator pe baza unei parole si a unui cont de utilizator.<\/em>&#8221;<\/p>\n<p><strong>Ac<\/strong><strong>t<\/strong><strong>iuni dedicate Zilei Mondiale a Sclerozei Multiple<\/strong><\/p>\n<p><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/www.afectiuni-neurodegenerative.ro\/\">Asociatia Pacientilor cu Afectiuni Neurodegenerative<\/a><\/span> a organizat anul acesta \u2013 cu prilejul\u00a0 Zilei Mondiale a Sclerozei Multiple &#8211; o intreaga campanie de constientizare a acestei afectiuni, care a inclus o serie de evenimente online: trei webinarii de informare si educare a persoanelor cu SM si apartinatorilor acestora (cu participarea neurologilor dr. Elena Terecoasa\/SUUB, dr. Simona Petrescu\/SUUElias, conf. dr. Cristina Panea\/SUUElias), un training pentru asistenti medicali specializati in ingrijirea persoanelor cu SM, intalniri cu autoritatile in cadrul unor transmisiuni live pe pagina Facebook a asociatiei si publicarea pe websiteul acesteia a unei serii de povesti reale ale persoanelor cu SM. De duminica, 30 mai, cand este celebrata Ziua Mondiala a sclerozei multiple, in social media va fi difuzat si un material video pentru awareness<strong>.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Asociatia Pacientilor cu Afectiuni Neurodegenerative (APAN Romania), membra a Platformei Europene pentru Scleroza Multipla, a organizat azi un eveniment dedicat Zilei Mondiale a Sclerozei Multiple, zi celebrata in fiecare an [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":12073,"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":[889,883,887,886,885,884,888,890],"class_list":["post-12071","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati","tag-apan-romania","tag-conectare-ma-conectez-ne-conectam","tag-cristina-panea","tag-cristina-tiu","tag-cristina-vladau","tag-scleroza-multipla","tag-simona-petrescu","tag-world-ms-day-2021"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ziua Mondiala a Sclerozei Multiple celebrata in fiecare an pe 30 mai<\/title>\n<meta name=\"description\" content=\"Ziua Mondiala a Sclerozei Multiple celebrata in fiecare an pe 30 mai cu tema campaniei World MS Day 2021 este \u201d#Conectare. 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