{"id":854,"date":"2024-04-26T15:06:37","date_gmt":"2024-04-26T15:06:37","guid":{"rendered":"https:\/\/pemaejetes.org.al\/?page_id=854"},"modified":"2024-04-26T16:04:49","modified_gmt":"2024-04-26T16:04:49","slug":"raport-informues-per-semundjen-e-sklerozes-multiple-dhe-gjendjen-e-pacienteve-prej-saj-ne-shqiperi","status":"publish","type":"page","link":"http:\/\/pemaejetes.org.al\/index.php\/raport-informues-per-semundjen-e-sklerozes-multiple-dhe-gjendjen-e-pacienteve-prej-saj-ne-shqiperi\/","title":{"rendered":"Raport informues p\u00ebr s\u00ebmundjen e skleroz\u00ebs multiple dhe gjendjen e pacienteve prej saj n\u00eb Shqip\u00ebri"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"854\" class=\"elementor elementor-854\">\n\t\t\t\t<div class=\"elementor-element elementor-element-1280df3 e-flex e-con-boxed e-con e-parent\" data-id=\"1280df3\" data-element_type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\" data-core-v316-plus=\"true\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-0161e3b elementor-widget elementor-widget-text-editor\" data-id=\"0161e3b\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.20.0 - 26-03-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p><strong>\u00a0Informacion i P\u00ebrgjithshme<\/strong><\/p><p>Skleroza multiple\u00a0e njohur ndryshe\u00a0 edhe si\u00a0 skleroza e shumefisht\u00eb\u00a0 \u00ebsht\u00eb nj\u00eb s\u00ebmundje q\u00eb ka lidhje me sistemin nervor qendror. Ajo klasifikohet n\u00eb s\u00ebmundjet autoimune diemielinizuese t\u00eb sistemit nervor q\u00ebndror duke e b\u00ebr\u00eb nj\u00eb s\u00ebmundje progresive degjenearative.<\/p><p>Pasojat e k\u00ebtyre d\u00ebmtimeve jan\u00eb mjaft t\u00eb dukshme pasi mund t\u00eb prekin pjese t\u00eb ndryshme t\u00eb trupit njer\u00ebzor duke paraqitur v\u00ebshtir\u00ebsi kryesisht n\u00eb l\u00ebvizje.<\/p><p>Diagnostifikimi i hersh\u00ebm dhe fillimi i mjekimit t\u00eb p\u00ebrshtatsh\u00ebm sipas tipologjis\u00eb s\u00eb s\u00ebmundjes jan\u00eb etapa mjaft t\u00eb r\u00ebnd\u00ebsishme p\u00ebr t\u00eb ruajtur cil\u00ebsin\u00eb e jet\u00ebs. Sa m\u00eb i von\u00eb t\u00eb jet\u00eb fillimi i mjekimit pacienti rrezikon q\u00eb n\u00ebp\u00ebrmjet (relapseve) atakeve q\u00eb pacient\u00ebve u ndodhin here pas here t\u00eb humbasin funksionet e l\u00ebvizjeve.\u00a0\u00a0 Prej k\u00ebtyre goditjeve\/ demtimeve preken nervi optik dhe kryesisht pjeset motorike t\u00eb l\u00ebvizjes.\u00a0<\/p><p>Pacient\u00ebt me Skleroz\u00eb multiple nenklasifikohen n\u00eb 5 tipologji t\u00eb k\u00ebsaj s\u00ebmundjeje (p\u00ebrs\u00ebrit\u00ebse-rikkthyese,\u00a0progresive sekondare, progresive kryesore, progresive perseritese dhe Beninj). Brenda ketyre formave ka edhe nenforma.<\/p><p>Kjo semundje prek moshat 25-40 vjec dhe p\u00ebrparon shume shpejt nese nuk trajtohesh me medikamentet e duhura t\u00eb cilat ndihmojn\u00eb frenimin e k\u00ebtyre d\u00ebmtimeve t\u00eb nervave duke ndihmuar k\u00ebta t\u00eb rinj t\u00eb b\u00ebjn\u00eb nj\u00eb jet\u00eb normale dhe mos t\u00eb arrijn\u00eb n\u00eb invalidizim n\u00eb mosh\u00eb t\u00eb re.<\/p><p><u>Kjo do t\u00eb thot\u00eb q\u00eb trajtimet sa m\u00eb efektive ndihmojn\u00eb n\u00eb stopimin e progresit t\u00eb k\u00ebsaj s\u00ebmundje duke i siguruar pacient\u00ebve nj\u00eb jet\u00eb dhe cil\u00ebsi jete normale. <\/u><\/p><p><u>\u00a0<\/u><\/p><p>N\u00eb bot\u00eb \u00ebsht\u00eb vazhdimisht n\u00eb k\u00ebrkim t\u00eb terapive t\u00eb reja. Eksperienca boterore ka treguar se keta pacient\u00eb kan\u00eb shum\u00eb mund\u00ebsi p\u00ebr t\u00eb punuar dhe t\u00eb b\u00ebjn\u00eb nj\u00eb jet\u00eb normal\u00eb. Aktualisht jan\u00eb arritur t\u00eb zbulohen dhe trajtohen pacient\u00ebt n\u00eb bot\u00eb me 64 (gjasht\u00ebdhjet\u00eb e kat\u00ebr) lloje medikamentesh ku p\u00ebrfshihen edhe ilacet paresore dhe dyt\u00ebsore. Nga eksperienca dhe studimet klinike terapit\u00eb e reja p\u00ebr trajtimin e Skleroz\u00ebs multiple e frenojn\u00eb s\u00ebmundjen deri n\u00eb mas\u00ebn 90 (n\u00ebnt\u00ebdhjet\u00eb) p\u00ebrqind.<\/p><p><strong>Situata ne Shqiperi e trajtimit me medikamente<\/strong><\/p><p>Situata n\u00eb Shqip\u00ebri l\u00eb shum\u00eb p\u00ebr t\u00eb d\u00ebshiruara, nuk mund t\u00eb krahasohet as me vendet fqinje t\u00eb rajonit jo m\u00eb t\u00eb Europ\u00ebs. N\u00eb vendin ton\u00eb nga Ministria e Sh\u00ebndet\u00ebsis\u00eb \u00ebsht\u00eb b\u00ebr\u00eb e mundur trajtimi i k\u00ebsaj s\u00ebmundje vet\u00ebm em 2 alternativa trajtimi : interferon dhe fingolimod.<\/p><p>Mund t\u00eb duket qesharake situata n\u00ebse do t\u00eb krahasoheshim me vendet e rajonit:<\/p><p>Figura 1 Numri i barnave t\u00eb rimbursuara ne shtetet fqinj (jashte BE)<\/p><p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone wp-image-856\" src=\"http:\/\/pemaejetes.org.al\/wp-content\/uploads\/2024\/04\/edw-300x184.jpg\" alt=\"\" width=\"333\" height=\"205\" srcset=\"http:\/\/pemaejetes.org.al\/wp-content\/uploads\/2024\/04\/edw-300x184.jpg 300w, http:\/\/pemaejetes.org.al\/wp-content\/uploads\/2024\/04\/edw-18x12.jpg 18w, http:\/\/pemaejetes.org.al\/wp-content\/uploads\/2024\/04\/edw.jpg 482w\" sizes=\"(max-width: 333px) 100vw, 333px\" \/><\/p><p>Krahasoni: n\u00eb Kosov\u00eb 3 alternativa trajtimi, n\u00eb Maqedoni 5, n\u00eb Mal t\u00eb ZI 10 lloje, dhe vet\u00ebm \u00a0n\u00eb Shqip\u00ebri 2 (dy). Duhet th\u00ebn\u00eb se edhe k\u00ebta dy lloje jan\u00eb futur si medikamente para vitit 2014 dhe asnj\u00eb nga trajtimet e reja dhe me efektive t\u00eb prodhuara se fundmi nuk eshte b\u00ebr\u00eb e mundur q\u00eb t\u00eb hyjn\u00eb n\u00eb skemen e rimbursimit edhe pse jan\u00eb regjistruar nd\u00ebr vite si m\u00eb posht\u00eb:<\/p><table><tbody><tr><td width=\"36\"><p>No<\/p><\/td><td width=\"156\"><p>Emertimi<\/p><\/td><td width=\"144\"><p>Viti i regjistrimit<\/p><\/td><\/tr><tr><td width=\"36\"><p>1<\/p><\/td><td width=\"156\"><p>Ocrevus<\/p><\/td><td width=\"144\"><p>2017<\/p><\/td><\/tr><tr><td width=\"36\"><p>2<\/p><\/td><td width=\"156\"><p>Mavecland<\/p><\/td><td width=\"144\"><p>2018<\/p><\/td><\/tr><tr><td width=\"36\"><p>3<\/p><\/td><td width=\"156\"><p>Kesimta<\/p><\/td><td width=\"144\"><p>2020<\/p><\/td><\/tr><tr><td width=\"36\"><p>4<\/p><\/td><td width=\"156\"><p>Mayzent<\/p><\/td><td width=\"144\"><p>2019<\/p><\/td><\/tr><tr><td width=\"36\"><p>5<\/p><\/td><td width=\"156\"><p>Remurel<\/p><\/td><td width=\"144\"><p>2019<\/p><\/td><\/tr><tr><td width=\"36\"><p>6<\/p><\/td><td width=\"156\"><p>Aubagio<\/p><\/td><td width=\"144\"><p>2016<\/p><\/td><\/tr><\/tbody><\/table><p><strong><u>Medikamenti i fundit i futur n\u00eb skem\u00ebn e rimbursimit n\u00eb Shqip\u00ebri p\u00ebr k\u00ebt\u00eb q\u00ebllim daton n\u00eb vitin 2014.<\/u><\/strong><\/p><p><strong><u>Barnat p\u00ebr t\u00eb cil\u00ebt pacient\u00ebt kan\u00eb mund\u00ebsi t\u00eb trajtohen dhe q\u00eb rimbursohen nga shteti n\u00eb Shqiperi deri me sot jane vetem: Interferonet dhe Fingolimod. <\/u><\/strong><\/p><p><strong>P\u00ebrpjekjet p\u00ebr t\u00eb mund\u00ebsuar trajtime m\u00eb efektive t\u00eb reja sic tregohet ne Tabelen me siper jane b\u00ebre ne vazhdimesi. Keshtu, qe ne vitet 2016 \u2013 2020 jane regjistruar 6 medikamente te reja. <u>Megjithese te regjistruara shteti nuk ka perfshire asnje nga keto medikamente qe nga viti 2014 ne skemen e ilaceve te rimbursueshme<\/u>. Keto medikamente nese nuk futen ne kete skeme, pacientet nuk mund ti perfitojne dot, pasi kane nje kosto te larte te paperballueshme dhe jane te perhershme.<\/strong><\/p><p><strong>Situata ne Shqiperi nga pikepamja sociale<\/strong><\/p><p>Ne pergjithesi keta paciente nga pikepamja sociale jane pa perkrahje. Kane humbur punen kryesisht dhe pergjegjshmeria sociale e biznesit dhe e shtetit eshte ne nivele shume te ulta. Edhe pse sipas ligjit ne fuqi punesimi i personave me aftesi nddryshe \u00a0eshte i detyrueshem, zbatueshmeria e ketij ligji eshte ne nivele shume te ulta. Humbja e punes sjell konsekuenca te ndryshme psikologjike. Sociale, ekonomike.<\/p><p><strong>Situata ne Shqiperi per qendrat e rehabilitimit<\/strong><\/p><p>Ne Shqiperi nuk ka asnje Qender Rehabilitimi shteterore per Sklerozen Multiple. Nderkohe qe trajtimi ne privat eshte shume i shtrenjte 20-25 euro \/ seance. Nese pranojme se kryhen 3-senca ne jave per pacient, atehere kostoja mujore per nje pacient me fizioterapi eshte = 240-300euro.<\/p><p>Nuk ka trajtim te vecante nga psikologu per rastet me probleme psikologjike.<\/p><p><strong>Konkluzioni<\/strong><\/p><p>\u00a0&#8211; Mungesa e medikamenteve sjell pasoj\u00ebn tragjike p\u00ebr pacient\u00ebt q\u00eb shprehen tek fakti: n\u00eb vendin ton\u00eb k\u00ebt\u00eb s\u00ebmundje e vuajn\u00eb 1850 q\u00ebnie njer\u00ebzore. E marrin nj\u00eb nga dy medikamentet ekzistues vet\u00ebm 136 (nj\u00ebqind e tridhjet\u00eb e gjashte persona).<\/p><p><strong>Sic mund te kuptohet qarte, mungesa e ilaceve te duhura ben qe numri i atyre pacienteve qe marrin ilace te jete i vogel 136 nga 1850, rreth =7.3%.<\/strong><\/p><p>T\u00eb tjer\u00ebt nuk pranojn\u00eb ta marrin, jo se nuk kan\u00eb nevoj\u00eb p\u00ebr t\u00eb, por se pasi e kan\u00eb provuar disa vite, kan\u00eb patur p\u00ebrkeq\u00ebsim dhe asnj\u00eb p\u00ebrmir\u00ebsim.<\/p><p><strong><u>At\u00ebher\u00eb, p\u00ebr nj\u00eb tender t\u00eb para 2014, apo p\u00ebr nj\u00eb p\u00ebrfitim individual t\u00eb dikujt, vuajn\u00eb dhe jan\u00eb apo shkojn\u00eb drejt paraliz\u00ebs mbi 1700 shqiptar\u00eb.<\/u><\/strong><\/p><p><strong>Shkalla e invaliditetit eshte shume e larte qe ne moshe te re si pasoje\u00a0 e mungeses se medikamenteve te rimbursueshme nga shteti ( vetem dy tipe jane ), mungeses se fizioterapise falas dhe mungeses se perkrahjes sociale.<\/strong><\/p><p>Pacient\u00ebt me k\u00ebt\u00eb lloj s\u00ebmundje kan\u00eb krijuar Shoqat\u00ebn e tyre me emrin dometh\u00ebn\u00ebs \u201cJETO P\u00cbRS\u00cbRI\u201d. Kuptohet, edhe ata duan ta b\u00ebjn\u00eb jet\u00ebn si gjith\u00eb t\u00eb tjer\u00ebt. E kan\u00eb ngritur z\u00ebrin edhe n\u00eb media t\u00eb shumta komb\u00ebtare, kan\u00eb zhvilluar edhe takime mes tyre kane bere edhe kerkese tek Fondi i Rimbursimit te Barnave, por deri tani asnj\u00eb hap konkret pozitiv p\u00ebr t&#8217;i ndihmuar p\u00ebr frenimin e s\u00ebmundjes s\u00eb rrezikshme.\u00a0<\/p><p>Dhe ata s&#8217;kan\u00eb shum\u00eb k\u00ebrkesa, por vet\u00ebm nj\u00eb: shteti p\u00ebrmes Ministris\u00eb s\u00eb Sh\u00ebndet\u00ebsis\u00eb, t&#8217;u ofroj\u00eb medikamente bashk\u00ebkohor\u00eb dobisjell\u00ebs p\u00ebr frenim e kurim, ashtu si dhe n\u00eb vendet fqini\u00eb me ne,.<\/p><p><strong><u>\u201c Futjen ne skemen e rimbursimit te ketyre ilaceve te reja dhe te shumta ne numer\u201d<\/u><\/strong><\/p><p><strong><u>\u00a0<\/u><\/strong><\/p><p><strong><u>Kjo semundje sjell edhe konsekuenca socialo-ekonomike pasi perkeqesimi i semundjes sjell humbjen e punesimit, statusin social dhe financen familjare.<\/u><\/strong><\/p><p><strong><u>\u00a0<\/u><\/strong><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>\u00a0Informacion i P\u00ebrgjithshme Skleroza multiple\u00a0e njohur ndryshe\u00a0 edhe si\u00a0 skleroza e shumefisht\u00eb\u00a0 \u00ebsht\u00eb nj\u00eb s\u00ebmundje q\u00eb ka lidhje me sistemin nervor qendror. Ajo klasifikohet n\u00eb s\u00ebmundjet autoimune diemielinizuese t\u00eb sistemit nervor q\u00ebndror duke e b\u00ebr\u00eb nj\u00eb s\u00ebmundje progresive degjenearative. Pasojat e k\u00ebtyre d\u00ebmtimeve jan\u00eb mjaft t\u00eb dukshme pasi mund t\u00eb prekin pjese t\u00eb ndryshme t\u00eb [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":875,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-854","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Raport informues p\u00ebr s\u00ebmundjen e skleroz\u00ebs multiple dhe gjendjen e pacienteve prej saj n\u00eb Shqip\u00ebri - Pema e Jetes<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/pemaejetes.org.al\/index.php\/raport-informues-per-semundjen-e-sklerozes-multiple-dhe-gjendjen-e-pacienteve-prej-saj-ne-shqiperi\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Raport informues p\u00ebr s\u00ebmundjen e skleroz\u00ebs multiple dhe gjendjen e pacienteve prej saj n\u00eb Shqip\u00ebri - Pema e Jetes\" \/>\n<meta property=\"og:description\" content=\"\u00a0Informacion i P\u00ebrgjithshme Skleroza multiple\u00a0e njohur ndryshe\u00a0 edhe si\u00a0 skleroza e shumefisht\u00eb\u00a0 \u00ebsht\u00eb nj\u00eb s\u00ebmundje q\u00eb ka lidhje me sistemin nervor qendror. Ajo klasifikohet n\u00eb s\u00ebmundjet autoimune diemielinizuese t\u00eb sistemit nervor q\u00ebndror duke e b\u00ebr\u00eb nj\u00eb s\u00ebmundje progresive degjenearative. 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