{"id":18617,"date":"2023-05-30T09:00:48","date_gmt":"2023-05-30T07:00:48","guid":{"rendered":"https:\/\/cst.cat\/dia-mundial-de-la-esclerosis-multiple\/"},"modified":"2023-05-30T09:00:49","modified_gmt":"2023-05-30T07:00:49","slug":"dia-mundial-de-la-esclerosis-multiple","status":"publish","type":"post","link":"https:\/\/cst.cat\/es\/dia-mundial-de-la-esclerosis-multiple\/","title":{"rendered":"D\u00eda Mundial de la Esclerosis M\u00faltiple"},"content":{"rendered":"\n
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L’esclerosi m\u00faltiple (EM) \u00e9s una malaltia cr\u00f2nica, inflamat\u00f2ria i neuro-degenerativa del sistema nervi\u00f3s central. Apareix generalment entre els vint i els quaranta anys, fet que suposa un enorme impacte en la qualitat de vida de qui la pateix, importants repercussions socials i un elevat cost sanitari.<\/h2>\n\n\n\n

Aquesta patologia \u00e9s la causa de discapacitat no traum\u00e0tica m\u00e9s gran en adults joves (afecta 2,5 milions de pacients al m\u00f3n) i, \u200b\u200bmalgrat la investigaci\u00f3 desenvolupada des del seu descobriment al segle XIX, encara presenta molts interrogants.<\/p>\n\n\n\n

Malauradament encara no se sap la causa de la p\u00e8rdua de mielina i, per tant, l’origen de l’esclerosi m\u00faltiple. S\u00ed que hi ha identificats for\u00e7a s\u00edmptomes i les diferents fases d’aquesta patologia, que afecta en un percentatge m\u00e9s gran dones (tres de cada quatre pacients d\u2019esclerosi m\u00faltiple s\u00f3n dones).<\/p>\n\n\n\n

Depenent d’on s’hagi produ\u00eft la desmielinitzaci\u00f3 i el seu grau, les conseq\u00fc\u00e8ncies per al sistema nervi\u00f3s central del pacient seran diferents. P\u00e8rdua de visi\u00f3, alteracions motores, manca de coordinaci\u00f3 muscular, sensaci\u00f3 de formigueig, o disfunci\u00f3 urin\u00e0ria i\/o sexual s\u00f3n alguns dels m\u00faltiples i variats s\u00edmptomes que presenten els pacients amb esclerosi m\u00faltiple.<\/p>\n\n\n\n

La diversitat en el grau i en la localitzaci\u00f3 on es produeix la manca de mielina, cosa que genera els diferents s\u00edmptomes, s\u00f3n dues de les caracter\u00edstiques b\u00e0siques de l’esclerosi m\u00faltiple, per aix\u00f2 s’anomena la ‘malaltia de les mil cares’.<\/p>\n\n\n\n

Segons Marta Fragoso<\/strong>, adjunta de Neurologia del Consorci Sanitari de Terrassa<\/strong>, l\u2019esclerosi m\u00faltiple no \u00e9s una malaltia de gent gran, sin\u00f3 d\u2019adults joves, d\u2019entre els vint i els quaranta anys. Per tant, en edat de treballar.<\/p>\n\n\n\n

N\u2019hem volgut parlar amb Carmen Mo\u00f1ino<\/strong>, pacient de trenta tres anys del Consorci Sanitari de Terrassa, en el Dia Mundial de l\u2019Esclerosi M\u00faltiple.<\/p>\n\n\n\n

La Carmen ens explica que al principi, quan li van diagnosticar la malaltia, se li adormia una cama i va perdre gran part de la sensibilitat. \u00abAl cap d\u2019un parell de setmanes se li va afegir un gran desequilibri, gaireb\u00e9 no podia caminar perqu\u00e8 em donava cops contra tot. Amb el tractament pr\u00e0cticament van desapar\u00e8ixer els s\u00edmptomes.\u00bb<\/p>\n\n\n\n

Quan li preguntem si la malaltia li condiciona la vida, ens contesta rotunda: \u00abEm condiciona, s\u00ed. Despr\u00e9s d’aquest brot n’he tingut m\u00e9s. Jo vull ser mare i per aix\u00f2, amb consentiment de la meva doctora, vaig haver de parar de medicar-me, cosa que va ocasionar que el 2020 vagi patir set brots, cadascun pitjor que l\u2019anterior, que em van deixar for\u00e7a tocada. Ara he millorat molt per\u00f2 tinc seq\u00fceles permanents i encara puc millorar en altres aspectes que es van veure danyats en aquests brots. I, clarament, ara requereixo molt m\u00e9s control i bones condicions per poder tornar a intentar ser mare.\u00bb<\/p>\n\n\n\n

L\u2019esclerosi m\u00faltiple l\u2019ha emp\u00e8s a canviar alguns h\u00e0bits, perqu\u00e8 li costa moure\u2019s. \u00abHi ha coses que em costa fer-les. Abans podia netejar el meu pis tot el mat\u00ed, ara ja no. He de dividir les tasques en diferents moments. Entre la fatiga cr\u00f2nica derivada de la malaltia, i el deteriorament que vaig patir amb els brots (del que encara no m\u2019he refet del tot), hi ha coses que per d\u2019altres persones son normals i per a mi s\u00f3n impensables o molt complicades. A m\u00e9s tamb\u00e9 em costa molt concentrar-me. Fins i tot estudiar, que \u00e9s el que estic fent ara, em costa un esfor\u00e7 extra. Per\u00f2 he de dir que em tenen for\u00e7a ben atesa en general i he aconseguit tornar a no haver de dependre de ning\u00fa per a les coses b\u00e0siques del dia a dia.\u00bb<\/p>\n\n\n\n

Despr\u00e9s dels brots de l\u2019any 2020, que li van suposar un gran deteriorament f\u00edsic, la Carmen va fer unes setmanes de rehabilitaci\u00f3, que la van ajudar a millorar for\u00e7a. La resta l\u2019ha fet pel seu compte i amb la medicaci\u00f3 adequada.<\/p>\n\n\n\n

Quan va con\u00e8ixer el seu diagn\u00f2stic el seu entorn va inquietar-se. \u00abEl meu germ\u00e0 gran ja tenia diagnosticada aquesta malaltia quan m’ho van dir a mi, per\u00f2 just m’acabava de mudar a Terrassa des de M\u00farcia i la fam\u00edlia i amics, que viuen all\u00e0, els va agafar de cop i volta, van tenir les seves inquietuds, com \u00e9s normal. A la meva parella li va fer por, als meus sogres tamb\u00e9. Per\u00f2 en general vaig tenir for\u00e7a suport, tant familiar com d’amistats, no em puc queixar. Jo sempre ho he intentat normalitzar, ja que formar\u00e0 part de mi el que em quedi de vida.\u00bb<\/p>\n\n\n\n

Quan et detecten la malaltia \u00e9s un cop. La Carmen vol donar alguns consells a d\u2019altres malalts acabats de diagnosticar. \u00abHo han d\u2019acceptar. Han de treballar per acceptar la malaltia. No dic que la vulguin, no dic que la venerin ni l’adorin, per\u00f2 que acceptin la malaltia com una part de si mateix. Una part que han de cuidar com qualsevol altra part de si mateix que necessiti una cura especial. La vida, amb malaltia o sense, segueix. Fes el que necessitis i triga el temps que necessitis perqu\u00e8 la teva sigui tan bona com sigui possible, tant f\u00edsicament com psicol\u00f2gicament.\u00bb<\/p>\n\n\n\n

Acabem la xerrada amb un agra\u00efment. \u00abM’agradaria fer una menci\u00f3 especial a la meva neur\u00f2loga, la doctora Marta Fragoso. La majoria dels brots van ser el 2020, o sigui, en plena pand\u00e8mia, i ella va estar disponible sempre, donant-me fins i tot un m\u00e8tode de comunicaci\u00f3 directa amb ella. Si no fos per ella, per l\u2019inter\u00e8s d\u2019informar de tot i la seva bona predisposici\u00f3 per a qu\u00e8 tingui una vida normal, ni m\u2019hauria plantejat tornar a intentar ser mare. Ella em va posar sobre la taula aquest tema de nou, amb totes les meves opcions i totes les facilitats. I, la veritat, li estar\u00e9 eternament agra\u00efda.\u00bb<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

L’esclerosi m\u00faltiple (EM) \u00e9s una malaltia cr\u00f2nica, inflamat\u00f2ria i neuro-degenerativa del sistema nervi\u00f3s central. Apareix generalment entre els vint i els quaranta anys, fet que suposa un enorme impacte en la qualitat de vida de qui la pateix, importants repercussions socials i un elevat cost sanitari. Aquesta patologia \u00e9s la causa de discapacitat no traum\u00e0tica […]<\/p>\n","protected":false},"author":4,"featured_media":18614,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[533],"tags":[296,340,399,452],"class_list":["post-18617","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dia-mundial-es","tag-neurologia-es","tag-dia-mundial-es","tag-esclerosis-multiple","tag-hospital-de-terrassa-es"],"acf":[],"yoast_head":"\nD\u00eda Mundial de la Esclerosis M\u00faltiple - CST<\/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:\/\/cst.cat\/es\/dia-mundial-de-la-esclerosis-multiple\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00eda Mundial de la Esclerosis M\u00faltiple - CST\" \/>\n<meta property=\"og:description\" content=\"L’esclerosi m\u00faltiple (EM) \u00e9s una malaltia cr\u00f2nica, inflamat\u00f2ria i neuro-degenerativa del sistema nervi\u00f3s central. Apareix generalment entre els vint i els quaranta anys, fet que suposa un enorme impacte en la qualitat de vida de qui la pateix, importants repercussions socials i un elevat cost sanitari. 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