{"id":46531,"date":"2022-09-07T08:29:29","date_gmt":"2022-09-07T06:29:29","guid":{"rendered":"https:\/\/rehagirona.com\/?p=46531"},"modified":"2022-09-07T08:34:42","modified_gmt":"2022-09-07T06:34:42","slug":"vida-adulta-i-duchenne-el-motiu-daquest-any-per-al-dia-mundial-de-la-conscienciacio-de-duchenne-2","status":"publish","type":"post","link":"https:\/\/www.rehagirona.com\/ca\/dia-mundial-duchenne-2022-ca\/","title":{"rendered":"&#8220;Vida adulta i Duchenne&#8221;, el motiu d&#8217;aquest any per al Dia Mundial de la Conscienciaci\u00f3 de Duchenne"},"content":{"rendered":"<p>Avui se celebra a tot el m\u00f3n el <strong><a href=\"https:\/\/www.worldduchenneday.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #faaf08;\">Dia Mundial de la Conscienciaci\u00f3 de Duchenne<\/span><\/a> (#WDAD2022)<\/strong>, i des de Rehagirona ens sumem a ell per crear consci\u00e8ncia sobre la distr\u00f2fia muscular de Duchenne i Becker (DMD \/ BMD).<\/p>\n<p>&nbsp;<\/p>\n<h2><em>DONES I DUCHENNE<\/em><\/h2>\n<p>El tema d&#8217;aquest any \u00e9s <em><strong>Dones i Duchenne<\/strong><\/em>. Tal com especifiquen des de <a href=\"https:\/\/www.duchenne-spain.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #faaf08;\"><strong>Duchenne Parent Project Espa\u00f1a<\/strong><\/span><\/a>, <strong>\u201cMitjan\u00e7ant la creaci\u00f3 de materials educatius espec\u00edfics, l&#8217;Organitzaci\u00f3 Mundial de Duchenne destacar\u00e0 tots els aspectes relacionats amb Duchenne i el m\u00f3n femen\u00ed:<\/strong><\/p>\n<ul>\n<li>Portadores: aspectes gen\u00e8tics i cl\u00ednics.<\/li>\n<li>Consideracions sobre la cura de les dones portadores.<\/li>\n<li>Les mares com a cuidadores principals.<\/li>\n<li>Nenes que viuen amb Duchenne.<\/li>\n<li>Esposes i amigues.<\/li>\n<li>Xarxa de suport a les dones de la fam\u00edlia.<\/li>\n<li>Dones a la ci\u00e8ncia.<\/li>\n<li>L\u00edders femenines de la defensa internacional.\u201d<\/li>\n<\/ul>\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 <strong>gen que codifica la distrofina<\/strong>, el <strong>DMD<\/strong>, \u00e9s el gen hum\u00e0 m\u00e9s llarg conegut i <strong>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)<\/strong>.<\/p>\n<p><iframe loading=\"lazy\" src=\"\/\/www.youtube.com\/embed\/DgL89ai2Dsg\" width=\"560\" height=\"314\" allowfullscreen=\"allowfullscreen\" data-mce-fragment=\"1\"><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<h2>QU\u00c8 \u00c9S LA DISTR\u00d2FIA MUSCULAR DE DUCHENNE I BECKER?<\/h2>\n<p>Duchenne i Becker MD s\u00f3n malalties gen\u00e8tiques rares definides per debilitat muscular.<br \/>\nEls m\u00fasculs es debiliten progressivament amb el temps.<br \/>\nAl final, aix\u00f2 afecta la capacitat de respirar, aix\u00ed com la funci\u00f3 de cor, ja que el cor tamb\u00e9 \u00e9s un m\u00fascul.<br \/>\nLes persones que neixen amb Duchenne i Becker requereixen atenci\u00f3 de diferents especialistes m\u00e8dics al llarg de la seva vida.<\/p>\n<p>&nbsp;<\/p>\n<h2><a href=\"https:\/\/www.duchenne-spain.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #faaf08;\">DUCHENNE PARENT PROJECT ESPANYA<\/span><\/a><\/h2>\n<p><a href=\"https:\/\/www.duchenne-spain.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"color: #faaf08;\"><strong>Duchenne Parent Project Espa\u00f1a<\/strong><\/span><\/a> \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 elles per tal d&#8217;oferir el millor suport a les persones afectades i les seves fam\u00edlies. Avancen a totes aquelles millores que incrementin la seva qualitat de vida i dediquen tots els recursos possibles a projectes d&#8217;investigaci\u00f3 per aconseguir una cura per la distr\u00f2fia muscular de Duchenne i Becker.<\/p>\n<p>&nbsp;<\/p>\n<h2>MANIFEST DUCHENNE (MANI<em>DUCHENNE<\/em>FIESTO)<\/h2>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-41632\" src=\"https:\/\/rehagirona.com\/wp-content\/uploads\/2021\/09\/manifiesto-dia-internacional-duchenne-rehagirona-2021-set1.jpg\" alt=\"&quot;Vida adulta i Duchenne&quot;, el motiu d'aquest any per al Dia Mundial de la Conscienciaci\u00f3 de Duchenne - Rehagirona\" width=\"703\" height=\"1335\" srcset=\"https:\/\/www.rehagirona.com\/wp-content\/uploads\/2021\/09\/manifiesto-dia-internacional-duchenne-rehagirona-2021-set1.jpg 703w, https:\/\/www.rehagirona.com\/wp-content\/uploads\/2021\/09\/manifiesto-dia-internacional-duchenne-rehagirona-2021-set1-158x300.jpg 158w, https:\/\/www.rehagirona.com\/wp-content\/uploads\/2021\/09\/manifiesto-dia-internacional-duchenne-rehagirona-2021-set1-539x1024.jpg 539w\" sizes=\"auto, (max-width: 703px) 100vw, 703px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Avui se celebra a tot el m\u00f3n el Dia Mundial de la Conscienciaci\u00f3 de Duchenne (#WDAD2022), 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":[1044],"tags":[3143,3142,1633],"class_list":["post-46531","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles","tag-becker-ca","tag-duchenne-ca","tag-rehagirona-2-ca"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - 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