{"id":51101,"date":"2023-09-07T09:24:46","date_gmt":"2023-09-07T07:24:46","guid":{"rendered":"https:\/\/rehagirona.com\/?p=51101"},"modified":"2023-09-07T09:24:46","modified_gmt":"2023-09-07T07:24:46","slug":"trencant-barreres-al-dia-mundial-de-la-conscienciacio-de-duchenne","status":"publish","type":"post","link":"https:\/\/www.rehagirona.com\/ca\/dia-mundial-duchenne-2023-ca\/","title":{"rendered":"\u201cTrencant barreres\u201d, al Dia Mundial de la Conscienciaci\u00f3 de Duchenne"},"content":{"rendered":"<p>Avui se celebra a tot el m\u00f3n el <a href=\"https:\/\/www.duchenne-spain.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #faaf08;\"><strong>Dia Mundial de la Conscienciaci\u00f3 de Duchenne<\/strong><\/span><\/a> (#WDAD2023), i des de Rehagirona ens hi sumem per crear consci\u00e8ncia sobre la distr\u00f2fia muscular de Duchenne i Becker (DMD\/BMD).<\/p>\n<p>&nbsp;<\/p>\n<h2>TRENCANT BARRERES<\/h2>\n<p>Les persones amb distr\u00f2fia muscular de Duchenne i Becker (DMD\/BMD) veuen greument limitada la seva capacitat per participar plenament a la vida i les activitats de la comunitat, ja que s&#8217;enfronten amb diferents barreres f\u00edsiques, sanit\u00e0ries i socials.<\/p>\n<p>La campanya d&#8217;aquest any, que t\u00e9 per lema <em><strong>Duchenne: trencant barreres<\/strong><\/em>, anima les persones a enderrocar murs a DMD, ja que nom\u00e9s junts, com a societat, podrem crear una societat inclusiva i construir un futur millor. <strong>Alguns exemples:<\/strong><\/p>\n<ol>\n<li><strong>Acc\u00e9s a l&#8217;atenci\u00f3 sanit\u00e0ria:<\/strong> garantir que les persones amb DMD\/BMD tinguin acc\u00e9s a una atenci\u00f3 m\u00e8dica integral i assequible per controlar-ne la malaltia i millorar-ne la qualitat de vida.<\/li>\n<li><strong>Accessibilitat:<\/strong> garantir que els espais p\u00fablics, com ara escoles, llocs de treball i centres comunitaris, siguin accessibles per a les persones amb DMD\/BMD.<\/li>\n<li><strong>Defensa:<\/strong> augmentar la conscienciaci\u00f3 sobre els reptes a qu\u00e8 s&#8217;enfronten les persones amb DMD\/BMD i advocar per pol\u00edtiques i programes que promoguin la inclusi\u00f3 social i la igualtat d&#8217;oportunitats per a les persones amb discapacitat.<\/li>\n<li><strong>Comprom\u00eds amb la comunitat:<\/strong> animar les persones amb DMD\/BMD a participar en activitats comunit\u00e0ries i proporcionar recursos i suport per ajudar-los a fer-ho.<\/li>\n<li><strong>Oportunitats de feina:<\/strong> crear oportunitats de feina per a les persones amb DMD\/BMD i proporcionar-los suport per trobar i mantenir una feina.<\/li>\n<li><strong>Educaci\u00f3 inclusiva:<\/strong> proporcionar oportunitats perqu\u00e8 les persones amb DMD\/BMD assisteixin a escoles ordin\u00e0ries i participin plenament a l&#8217;experi\u00e8ncia educativa.<\/li>\n<\/ol>\n<p>La distr\u00f2fia muscular de Duchenne \u00e9s causada per un gen defectu\u00f3s per a la distr\u00f2fina (una prote\u00efna als m\u00fasculs). El gen que codifica la distrofina, el DMD, \u00e9s el gen hum\u00e0 m\u00e9s llarg conegut i consta de 79 exons, i per aix\u00f2 el Dia Mundial d&#8217;aquest trastorn se celebra el 7 de setembre (dia 7 del mes 9).<\/p>\n<p>&nbsp;<\/p>\n<h2>QU\u00c8 \u00c9S LA DISTR\u00d2FIA MUSCULAR DE DUCHENNE I BECKER?<\/h2>\n<ul>\n<li>Duchenne i Becker MD s\u00f3n malalties gen\u00e8tiques rares definides per debilitat muscular.<\/li>\n<li>Els m\u00fasculs es debiliten progressivament amb el temps.<\/li>\n<li>En darrera inst\u00e0ncia, aix\u00f2 afecta la capacitat de respirar, aix\u00ed com la funci\u00f3 del cor, ja que el cor tamb\u00e9 \u00e9s un m\u00fascul.<\/li>\n<li>Les persones que neixen amb Duchenne i Becker requereixen atenci\u00f3 de diferents especialistes m\u00e8dics al llarg de la vida.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<h2>DUCHENNE PARENT PROJECT ESPANYA<\/h2>\n<p>Duchenne Parent Project Espa\u00f1a \u00e9s una associaci\u00f3 sense \u00e0nim de lucre creada i dirigida per pares i mares de nens afectats, que lluita incansable per trobar una cura o tractament i millorar la qualitat de vida dels afectats i les seves fam\u00edlies.<\/p>\n<p>Treballen des de diverses l\u00ednies d&#8217;actuaci\u00f3, totes per tal d&#8217;oferir el millor suport a les persones afectades i les seves fam\u00edlies. Avancen en totes aquelles millores que incrementin la seva qualitat de vida i dediquen tots els recursos possibles a projectes de recerca per aconseguir una cura per a la distr\u00f2fia muscular de Duchenne i Becker.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Avui se celebra a tot el m\u00f3n el Dia Mundial de la Conscienciaci\u00f3 de Duchenne (#WDAD2023), i des de Rehagirona [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":46541,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1050],"tags":[],"class_list":["post-51101","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novedades-ca"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u201cTrencant barreres\u201d, al Dia Mundial Conscienciaci\u00f3 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