{"id":19730,"date":"2024-05-10T11:15:29","date_gmt":"2024-05-10T11:15:29","guid":{"rendered":"https:\/\/www.eurofirmsfoundation.org\/es\/?p=19730"},"modified":"2024-07-23T09:33:20","modified_gmt":"2024-07-23T09:33:20","slug":"dia-mundial-sindromes-de-sensibilizacion-central","status":"publish","type":"post","link":"https:\/\/www.eurofirmsfoundation.org\/es\/ca\/noticias\/dia-mundial-sindromes-de-sensibilizacion-central\/","title":{"rendered":"La discapacitat f\u00edsica tamb\u00e9 pot ser invisible: dolor i fatiga cr\u00f2nica, el cim de tota una simptomatologia complexa"},"content":{"rendered":"\n<ul class=\"wp-block-list\">\n<li>Els S\u00edndromes de Sensibilitzaci\u00f3 Central s\u00f3n causa de discapacitat f\u00edsica org\u00e0nica i afecten m\u00e9s del 5% de la poblaci\u00f3\u00a0\u00a0<\/li>\n\n\n\n<li>Aquests s\u00edndromes inclouen una multitud de s\u00edmptomes i malalties invisibles que dificulten la vida di\u00e0ria i generen incomprensi\u00f3 per part de l&#8217;entorn\u00a0<\/li>\n\n\n\n<li>L&#8217;acompanyament de l&#8217;entorn i les adaptacions laborals s\u00f3n clau per a garantir que les persones amb discapacitat puguin cr\u00e9ixer professional i personalment<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">T&#8217;imagines despertar-te un dia i que la teva vida hagi canviat per complet? Segur que no \u00e9s la primera vegada en la qual alg\u00fa et planteja aquest escenari, i probablement t&#8217;imagines amb un mili\u00f3 en el compte del banc i de vacances en una illa paradis\u00edaca.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Aquesta situaci\u00f3 passa m\u00e9s sovint del que ens imaginem, i l&#8217;escenari que es presenta \u00e9s molt diferent de l&#8217;imaginat: moltes persones es veuen afectades sobtadament per una discapacitat.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">De fet, s&#8217;estima que m\u00e9s del 70% de les discapacitats s\u00f3n sobrevingudes (CERMI, 2020). A m\u00e9s, un 80% s\u00f3n invisibles (Nacions Unides, 2023). Ning\u00fa les veu des de fora, i per aix\u00f2, a vegades sembla que no existeixen.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per aix\u00f2, avui 12 de maig, Dia Internacional de les S\u00edndromes de Sensibilitzaci\u00f3 Central (SSC), des de&nbsp;Eurofirms&nbsp;Foundation&nbsp;volem parlar-vos d&#8217;aquelles malalties cr\u00f2niques invalidants, que no tenen una base gen\u00e8tica determinada, i que s\u00f3n en la seva majoria invisibles.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Els S\u00edndromes de Sensibilitzaci\u00f3 Central s\u00f3n el paraigua -i a vegades, calaix de sastre- de diferents malalties, s\u00edndromes i s\u00edmptomes, com ho s\u00f3n la Fibromi\u00e0lgia, la S\u00edndrome de Fatiga Cr\u00f2nica i\/o Encefalomielitis\u00a0Mi\u00e1lgica, la S\u00edndrome de l&#8217;Intest\u00ed Irritable, la migranya o altres menys coneguts com la Sensibilitat Qu\u00edmica M\u00faltiple o la\u00a0Electrohipersensibilidad. Afecten un 5% de la poblaci\u00f3 (AQUAS, 2023), per\u00f2 s&#8217;estima que aquesta xifra s&#8217;elevaria fins entre el 10% i el 20% si la fase de diagn\u00f2stic fos m\u00e9s encertada. Impacten 4 vegades m\u00e9s a dones que a homes, encara que no discrimina entre classes socials ni edats.\u00a0\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Viure amb aquestes malalties \u00e9s limitant, ja que la seva simptomatologia \u00e9s diversa i molt \u00e0mplia: fatiga extrema despr\u00e9s del m\u00ednim esfor\u00e7 que no millora amb el descans, cefalees tensionals, dolor pelvi\u00e0, dolor miofascial, dismenorrea, cistitis, disfunci\u00f3&nbsp;temporo-mandibular, somni no reparador, problemes cognitius, inestabilitat ortost\u00e0tica, p\u00e8rdua del control homeost\u00e0tic, costocondritis, S\u00edndrome de cames inquietes\u2026<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ja t&#8217;has cansat de llegir la llista de s\u00edmptomes? Perqu\u00e8 \u00e9s infinitament m\u00e9s llarga. A m\u00e9s, aquestes malalties s&#8217;acompanyen d&#8217;altres comorbiditats: per exemple, les persones que les sofrim som m\u00e9s propenses a emmalaltir-nos perqu\u00e8 el nostre Sistema Nervi\u00f3s Central mant\u00e9 al nostre sistema immune en una alerta constant, tenint uns nivells d&#8217;inflamaci\u00f3 molt elevats i fatigant-nos despr\u00e9s del m\u00e9s m\u00ednim esfor\u00e7. Tamb\u00e9 perdem l&#8217;equilibri, tenim hipertensi\u00f3 i ens acompanyen un munt d&#8217;al\u00b7l\u00e8rgies i intoler\u00e0ncies: des de la lactosa fins als raigs de sol.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per\u00f2 si et preguntes qu\u00e8 \u00e9s el que porto pitjor, et diria que el fet de viure en un estat v\u00edric permanent. Saps aquesta sensaci\u00f3 de malestar general quan tens la grip? Perqu\u00e8 en la majoria dels casos, i especialment entre aquelles persones que sofrim S\u00edndrome de Fatiga Cr\u00f2nica, el nostre cos viu \u201csegrestat\u201d pel virus del&nbsp;Epstein&nbsp;Barr&nbsp;(entre altres virus), per la qual cosa tenim febre o febr\u00edcula gaireb\u00e9 di\u00e0riament, mal de coll, ganglis limf\u00e0tics inflamats i s\u00ed, una fatiga extrema.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Qu\u00e8 dius que tamb\u00e9 sents cansament? Clar, treball, casa, fam\u00edlia, oci\u2026 Per\u00f2 estar cansat o cansada no \u00e9s sofrir una fatiga cr\u00f2nica invalidant. Et despertes cada dia com si t&#8217;hagu\u00e9s atropellat un cami\u00f3, o, per llevar-li el toc dram\u00e0tic, \u00e9s com despertar-se despr\u00e9s d&#8217;una ressaca despr\u00e9s d&#8217;arrasar amb la barra lliure de les noces del teu millor amic.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Viure amb una discapacitat aix\u00ed \u00e9s una batalla constant entre la fatiga, els problemes cognitius, de mem\u00f2ria, de concentraci\u00f3, i la imatge de la persona que eres abans d&#8217;emmalaltir i que t&#8217;exigeix que t&#8217;esforcis i segueixis amb el ritme de vida que la societat i el teu entorn m\u00e9s pr\u00f2xim esperen de tu.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per\u00f2 sobretot \u00e9s frustrant quan les persones et miren i diuen un \u201cper\u00f2 si fas molt bona cara!\u201d o \u201camb el bufona que vas vestida no sembla que tinguis discapacitat!\u201d. I no, no m&#8217;ho invento perqu\u00e8 m&#8217;ho han dit milions de vegades. Ara ja he optat per repetir\u00a0outfit, no vagi a ser que sigui menys discapacitada per estrenar vestit.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Un art\u00edculo de:<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.linkedin.com\/in\/mireialopezalvarez\/?originalSubdomain=es\">Mireia L\u00f3pez \u00c1lvarez<\/a><em><br>Consultora en D&amp;I en Eurofirms Foundation<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Los S\u00edndromes de Sensibilizaci\u00f3n Central son causa de discapacidad f\u00edsica org\u00e1nica y afectan a m\u00e1s del 5% de la poblaci\u00f3n  <\/p>\n","protected":false},"author":2,"featured_media":19751,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[2],"tags":[55,37,38],"class_list":["post-19730","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sin-categorizar-ca","tag-alianzas-ca","tag-eventos-ca","tag-sensibilizacion-ca"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v20.1 - 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