{"id":158,"date":"2015-02-06T22:26:15","date_gmt":"2015-02-07T04:26:15","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=158"},"modified":"2015-02-06T22:26:15","modified_gmt":"2015-02-07T04:26:15","slug":"jose-antonio","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/","title":{"rendered":"INDIVIDU AVEC LGMD : Jos\u00e9 Antonio"},"content":{"rendered":"<p>02\/06\/2015:<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/02\/LGMD2B-Jose-Antonio.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-159 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/02\/LGMD2B-Jose-Antonio-300x169.png\" alt=\"LGMD2B - Jose Antonio\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>NOM<\/strong>: Jos\u00e9 Antonio<\/p>\n<p><strong>AGE :<\/strong> 48<\/p>\n<p><strong>PAYS :<\/strong> Mexique<\/p>\n<p><strong>LGMD Sous-type :<\/strong> LGMD 2B\/Dysferlinopathie<\/p>\n<p><strong>A quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong> \u00e0 l'\u00e2ge de 46 ans<\/p>\n<p><strong>QUELS ONT \u00c9T\u00c9 VOS PREMIERS SYMPT\u00d4MES :<\/strong><br \/>\nJ'ai commenc\u00e9 \u00e0 ressentir une faiblesse musculaire \u00e0 l'\u00e2ge de 30 ans. On m'a d\u00e9couvert un probl\u00e8me cardiaque au niveau de l'aorte et le cardiologue a pens\u00e9 que ma faiblesse musculaire \u00e9tait due \u00e0 ce probl\u00e8me. J'ai pass\u00e9 un EMG et les r\u00e9sultats \u00e9taient bons, mais je n'arr\u00eatais pas de tomber, de me cogner, de manquer de force dans les jambes pour monter les escaliers ou dans les bras pour soulever des objets lourds. Je pense que le sympt\u00f4me le plus alarmant a \u00e9t\u00e9 lorsque j'ai d\u00e9couvert que je ne pouvais pas sauter, j'ai alors su que quelque chose n'allait pas.<\/p>\n<p><strong>AVEZ-VOUS D'AUTRES MEMBRES DE LA FAMILLE ATTEINTS DE LGMD : Non <\/strong><br \/>\n<strong>QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD :<\/strong><br \/>\nTout ce qu'il y a \u00e0 faire ! Une fois qu'on m'a aid\u00e9e \u00e0 sortir du lit, je dois m'asseoir dans une chaise sp\u00e9ciale pour aller aux toilettes, puis on doit me soulever pour que je puisse m'asseoir dans un fauteuil roulant. Je suis des s\u00e9ances de kin\u00e9sith\u00e9rapie du lundi au vendredi. Le physioth\u00e9rapeute me soul\u00e8ve \u00e0 l'aide d'une ceinture et je marche avec lui sur une dizaine de m\u00e8tres \u00e0 plusieurs reprises. Il me fait fl\u00e9chir les bras avec des poids de 1 kg, puis ils me soul\u00e8vent dans mon v\u00e9hicule et m'emm\u00e8nent sur mon lieu de travail o\u00f9 je reste dans mon v\u00e9hicule. Le plus triste, c'est que je vois mes enfants grandir et que je ne peux pas les accompagner pour profiter de choses simples : la plage, le cin\u00e9ma, les parcs, etc. C'est ma femme qui s'en charge, elle est tr\u00e8s d\u00e9vou\u00e9e et m'aide beaucoup.<\/p>\n<p><strong>QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION :<\/strong><br \/>\nPouvoir rester en contact avec mes clients et continuer \u00e0 travailler \u00e0 ma fa\u00e7on.<\/p>\n<p><strong>COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR DEVENIR LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI ?<\/strong>:<br \/>\nJ'ai appris \u00e0 appr\u00e9cier les gens qui m'aident, \u00e0 avoir de la patience, \u00e0 garder espoir et \u00e0 ne pas me sentir d\u00e9prim\u00e9e, \u00e0 \u00eatre reconnaissante pour tout, \u00e0 comprendre les gens qui ne sont pas dans la m\u00eame situation que moi et qui sont dans une situation difficile, \u00e0 appr\u00e9cier ce que j'ai et \u00e0 \u00e9conomiser, \u00e0 donner plus d'amour \u00e0 ma famille chaque jour comme si c'\u00e9tait le dernier.<br \/>\n<strong>QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD :<\/strong><br \/>\nIl est difficile d'accomplir de petites choses insignifiantes pour les autres, de les informer sur ces maladies rares et de susciter un int\u00e9r\u00eat accru pour l'\u00e9tude des causes de leur apparition et des moyens de les \u00e9viter. Il faut aussi un diagnostic pr\u00e9coce pour que les patients puissent prendre des vitamines afin d'\u00e9viter les probl\u00e8mes de sant\u00e9, car lorsque nous devenons moins mobiles, notre corps s'affaiblit et notre syst\u00e8me immunitaire s'affaiblit. Enfin, et c'est le plus important, il faut trouver un traitement ou une cure pour cette maladie !<\/p>\n<p><strong>SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS VOUDRIEZ FAIRE :<\/strong><br \/>\nJe marcherais sur la plage, je courrais, je monterais les escaliers, je voyagerais avec mes enfants sans qu'ils aient \u00e0 s'inqui\u00e9ter pour moi. J'emm\u00e8nerais ma femme manger dans un endroit magnifique et je la remercierais pour tout l'amour qu'elle me porte en \u00e9tant capable de m'aider et de prendre soin de moi. Je serrerais mes enfants dans mes bras pour les remercier de tout le soutien qu'ils m'apportent chaque jour.<\/p>","protected":false},"excerpt":{"rendered":"<p>02\/06\/2015: NAME: Jos\u00e9 Antonio AGE: 48 COUNTRY: M\u00e9xico LGMD Sub-Type: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":159,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,24],"class_list":["post-158","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-mexico"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - Jos\u00e9<\/title>\n<meta name=\"description\" content=\"Jos\u00e9, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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