{"id":47266,"date":"2022-10-25T10:39:12","date_gmt":"2022-10-25T08:39:12","guid":{"rendered":"https:\/\/rehagirona.com\/?p=47266"},"modified":"2022-10-25T10:39:12","modified_gmt":"2022-10-25T08:39:12","slug":"eleva-la-teva-veu-al-dia-mundial-de-lespina-bifida-i-hidrocefalia","status":"publish","type":"post","link":"https:\/\/www.rehagirona.com\/ca\/dia-mundial-espina-bifida-hidrocefalia-2022\/","title":{"rendered":"“Eleva la teva veu” al Dia Mundial de l’Espina B\u00edfida i Hidrocef\u00e0lia"},"content":{"rendered":"

Amb l’objectiu de conscienciar la poblaci\u00f3 que l’espina b\u00edfida \u00e9s una malaltia relativament f\u00e0cil de prevenir, avui se celebra el Dia Mundial de l’Espina B\u00edfida i Hidrocef\u00e0lia<\/strong><\/span><\/a>.<\/p>\n

 <\/p>\n

LEMA 2022: ELEVA LA TEVA VEU<\/em><\/h2>\n

La visi\u00f3 de la International Federation for Spina Bifida and Hydrocephalus (IF)<\/strong><\/span><\/a> \u00e9s una societat que garanteixi els drets humans dels nens i adults amb Espina B\u00edfida i Hidrocef\u00e0lia (SBH), i que celebri les seves contribucions a tots els \u00e0mbits de la vida, garantint alhora l’equitat a tots els nivells i per a tots.<\/p>\n

La Convenci\u00f3 de les Nacions Unides sobre els Drets de les Persones amb Discapacitat (UNCRPD en angl\u00e8s) representa una fita important en l’aven\u00e7 continu dels drets de les persones amb discapacitat. La convenci\u00f3 descriu els drets humans i les llibertats fonamentals de les persones amb discapacitat i les obligacions dels Estats part de la CNUDPD de promoure i protegir aquests drets.<\/p>\n

L’accessibilitat i la inclusi\u00f3 s\u00f3n reptes a qu\u00e8 s’enfronten sovint les persones amb SBH. L’estigma, la discriminaci\u00f3 i la manca de conscienciaci\u00f3 creen m\u00e9s barreres per al ple gaudiment de la vida. Per aquests motius, la proposta d’aquest any de la IF \u00e9s \u201cEleva la teva veu\u201d. A Rehagirona ens unim a aquesta crida i t’animem a elevar la teva veu!<\/p>\n

\"Eleva<\/p>\n

ESPINA B\u00cdFIDA<\/h2>\n

L’espina b\u00edfida \u00e9s la segona causa de discapacitat f\u00edsica en la inf\u00e0ncia, despr\u00e9s de la par\u00e0lisi cerebral<\/strong>. I \u00e9s una malaltia que en part es pot prevenir. Segons la Federaci\u00f3 Espanyola de Malalties Rares (FEDER), aquest trastorn est\u00e0 provocat per factors m\u00faltiples<\/strong> i alguns estudis demostren que la ingesta d’\u00e0cid f\u00f2lic (una vitamina B), tots els dies abans i a l’comen\u00e7ament de l’embar\u00e0s, disminueix el risc de defectes en el tub neural.<\/p>\n

Qu\u00e8 \u00e9s l’espina b\u00edfida?<\/h3>\n

L’espina b\u00edfida \u00e9s un desenvolupament incomplet de la medul\u00b7la espinal, les meninges i\/o vertebres, que impedeixen que la columna es tanqui completament<\/strong>. En conseq\u00fc\u00e8ncia, la medul\u00b7la espinal i les meninges queden al descobert i aix\u00f2 provoca que les seves fibres nervioses resultin afectades. Es poden localitzar en diferents nivells de la columna; no obstant aix\u00f2, \u00e9s a la regi\u00f3 lumbar i sacre on apareix amb m\u00e9s freq\u00fc\u00e8ncia.<\/p>\n

A L’Estat espanyol entre 8-10 de cada 10.000 nounats vius presenta alguna malformaci\u00f3 del tub neural dels quals m\u00e9s de la meitat d’ells estan afectats per EB (segons Estudi Col\u00b7laboratiu Espanyol de Malformacions Cong\u00e8nites).<\/p>\n

Tipus d’espina b\u00edfida<\/h3>\n
    \n
  • Espina B\u00edfida oculta<\/strong>. Abs\u00e8ncia de tancament dels arcs vertebrals posteriors. No hi ha afectaci\u00f3 de la medul\u00b7la espinal ni de les seves estructures adjacents. Generalment passa inadvertida. T\u00e9 una afectaci\u00f3 molt lleu.<\/li>\n
  • Lipomeningocele<\/strong>. Error de fusi\u00f3 dels arcs vertebrals amb protusi\u00f3 d’una bossa plena de teixit lipomat\u00f3s. Pot produir seq\u00fceles neurol\u00f2giques.<\/li>\n
  • Meningocele<\/strong>. Error de fusi\u00f3 dels arcs vertebrals amb distensi\u00f3 qu\u00edstica de les meninges, aquestes estan afectades, per\u00f2 la medul\u00b7la espinal es mant\u00e9 correcta. Les seq\u00fceles neurol\u00f2giques existeixen, per\u00f2 s\u00f3n poc importants.<\/li>\n
  • Mielomeningocele<\/strong>. Error de fusi\u00f3 dels arcs vertebrals amb distensi\u00f3 qu\u00edstica de les meninges i displ\u00e0sia de la medul\u00b7la. La medul\u00b7la espinal i les meninges estan danyades. Les seq\u00fceles neurol\u00f2giques s\u00f3n importants.<\/li>\n<\/ul>\n

     <\/p>\n","protected":false},"excerpt":{"rendered":"

    Amb l’objectiu de conscienciar la poblaci\u00f3 que l’espina b\u00edfida \u00e9s una malaltia relativament f\u00e0cil de prevenir, avui se celebra el […]<\/p>\n","protected":false},"author":2,"featured_media":47258,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[],"tags":[3167,3166],"class_list":["post-47266","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","tag-espina-bifida-ca","tag-hidrocefalia-ca"],"acf":[],"yoast_head":"\n"Eleva la teva veu" al Dia Mundial de l'Espina B\u00edfida i Hidrocef\u00e0lia<\/title>\n<meta name=\"description\" content=\"L'accessibilitat i la inclusi\u00f3 s\u00f3n reptes a qu\u00e8 s'enfronten sovint les persones amb Espina B\u00edfida i Hidrocef\u00e0lia\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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