{"id":60347,"date":"2025-09-05T10:47:06","date_gmt":"2025-09-05T08:47:06","guid":{"rendered":"https:\/\/www.rehagirona.com\/?p=60347"},"modified":"2025-09-05T10:52:03","modified_gmt":"2025-09-05T08:52:03","slug":"la-familia-el-cor-de-la-cura-el-dia-mundial-duchenne","status":"publish","type":"post","link":"https:\/\/www.rehagirona.com\/ca\/dia-mundial-duchenne-2025-ca\/","title":{"rendered":"\u201cLa fam\u00edlia, el cor de la cura\u201d, el Dia Mundial Duchenne"},"content":{"rendered":"<p>Avui se celebra a tot el m\u00f3n el <a href=\"https:\/\/www.duchenne-spain.org\/blog\/dia-mundial-de-la-concienciacion-de-duchenne-la-familia-el-corazon-del-cuidado-7-de-septiembre-de-2025-wdad2025\/\" target=\"_blank\" rel=\"noopener\"><strong><span style=\"color: #faaf08;\">Dia Mundial de la Conscienciaci\u00f3 de Duchenne<\/span><\/strong><\/a> (#WDAD2025), i <strong>des de Rehagirona ens hi sumem per crear consci\u00e8ncia sobre la distr\u00f2fia muscular de Duchenne<\/strong> (DMD).<\/p>\n<p>&nbsp;<\/p>\n<h2>LA FAM\u00cdLIA, EL COR DE LA CURA<\/h2>\n<p>El tema d&#8217;aquest any destaca el paper dels familiars que viuen amb les persones amb distr\u00f2fia muscular de Duchenne i Becker, ja que viure amb distr\u00f2fia muscular de Duchenne comporta molts desafiaments f\u00edsics i una alta resili\u00e8ncia emocional, i al centre d&#8217;aquesta experi\u00e8ncia hi ha la fam\u00edlia.<\/p>\n<p>L&#8217;amor, el suport i la participaci\u00f3 di\u00e0ria dels familiars directes tenen un paper vital, no nom\u00e9s en la cura, sin\u00f3 tamb\u00e9 en la formaci\u00f3 de la qualitat de vida i el benestar emocional dels que viuen amb DMD.<\/p>\n<p>Per a una persona amb Duchenne, els pares solen ser els seus defensors m\u00e9s fidels i els cuidadors m\u00e9s dedicats; els germans s\u00f3n companys i amics de tota la vida; els avis, oncles i tietes s\u00f3n una pres\u00e8ncia que els ajuda a mantenir la calma. La fam\u00edlia tamb\u00e9 pot ser la comunitat on les persones viuen de manera inclusiva.<\/p>\n<p>&nbsp;<\/p>\n<h2>DOCUMENTAL DIA MUNDIAL DUCHENE 2025<\/h2>\n<p>El 7 de setembre, l&#8217;Organitzaci\u00f3 Mundial de Duchenne presentar\u00e0 un documental que segueix fam\u00edlies de diferents parts del m\u00f3n mentre lidien amb la vida amb distr\u00f2fia muscular de Duchenne. A trav\u00e9s d&#8217;entrevistes \u00edntimes i moments quotidians, revela no nom\u00e9s els desafiaments m\u00e8dics i emocionals de la DMD, sin\u00f3 tamb\u00e9 l&#8217;amor profund, la resili\u00e8ncia i l&#8217;esperan\u00e7a que uneixen fam\u00edlies de diferents cultures. M\u00e9s que una pel\u00b7l\u00edcula, \u00e9s una crida global a la conscienciaci\u00f3, la comprensi\u00f3 i la unitat.<\/p>\n<p>Aquest \u00e9s el tr\u00e0iler:<\/p>\n<p><iframe loading=\"lazy\" src=\"\/\/www.youtube.com\/embed\/xoMFtOnuD0s?si=lg1jPJxiDzEBYfkL\" width=\"560\" height=\"314\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<h2>QU\u00c8 \u00c9S LA DISTR\u00d2FIA MUSCULAR DE DUCHENNE?<\/h2>\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>\u00c9s una malaltia gen\u00e8tica rara definida per debilitat muscular: els m\u00fasculs es debiliten progressivament amb el temps i, 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. Les persones que neixen amb Duchenne requereixen atenci\u00f3 de diferents especialistes m\u00e8dics al llarg de la vida.<\/p>\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<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 (#WDAD2025), i des de Rehagirona [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":51098,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6006],"tags":[7327,3142,1633],"class_list":["post-60347","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dia-internacional-ca","tag-dia-mundial-duchenne-ca","tag-duchenne-ca","tag-rehagirona-2-ca"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u201cLa fam\u00edlia, el cor de la cura\u201d, el Dia Mundial Duchenne - 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