{"id":1330,"date":"2016-09-23T09:22:39","date_gmt":"2016-09-23T14:22:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1330"},"modified":"2016-09-23T09:22:39","modified_gmt":"2016-09-23T14:22:39","slug":"tony","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/09\/23\/tony\/","title":{"rendered":"INDIVIDU AVEC LGMD : Tony"},"content":{"rendered":"

LGMD \"Spotlight Interview\" (en anglais)<\/p>\n

Nom<\/strong>: Tony \u00a0L'\u00e2ge<\/strong>:\u00a0 32\"lgmd2i-tony-h\"<\/a><\/p>\n

Pays<\/strong>: \u00c9tats-Unis<\/p>\n

LGMD Sous-type<\/strong>: LGMD2i<\/p>\n

 <\/p>\n

\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong>:<\/p>\n

On m'a diagnostiqu\u00e9 une LGMD vers l'\u00e2ge de 26 ans \u00e0 la Cleveland Clinic, puis on m'a officiellement diagnostiqu\u00e9 2i l'ann\u00e9e derni\u00e8re gr\u00e2ce \u00e0 un test g\u00e9n\u00e9tique.<\/p>\n

QUELS ONT \u00c9T\u00c9 LES PREMIERS SYMPT\u00d4MES ?<\/strong>:<\/p>\n

En y repensant, j'ai toujours eu du mal \u00e0 suivre les autres enfants en faisant du sport, de la randonn\u00e9e, de la course \u00e0 pied, etc. Mes premiers sympt\u00f4mes ont commenc\u00e9 \u00e0 se manifester alors que je faisais des tourn\u00e9es avec des groupes et que je chargeais mon mat\u00e9riel tous les soirs, il y a une dizaine d'ann\u00e9es. J'ai commenc\u00e9 \u00e0 avoir un peu de mal \u00e0 faire des choses qui ne m'avaient jamais pos\u00e9 de probl\u00e8mes auparavant (monter des escaliers sans utiliser de rampe, porter du mat\u00e9riel lourd, etc.) J'ai continu\u00e9 \u00e0 remarquer que de petites choses devenaient de plus en plus difficiles pendant mes \u00e9tudes universitaires, mais je l'ai (bien s\u00fbr) ignor\u00e9 pendant des ann\u00e9es.<\/p>\n

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD : <\/strong><\/p>\n

Non. Il n'y a que moi.<\/p>\n

QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD ?<\/strong>:<\/p>\n

S'ajuster, s'adapter et renoncer \u00e0 des choses que j'ai beaucoup appr\u00e9ci\u00e9es. Devoir \u00eatre extr\u00eamement prudent dans pratiquement tous mes mouvements. Des choses comme aller courir (m\u00eame si ce n'\u00e9tait pas tr\u00e8s gracieux), aller faire ses courses \u00e0 pied et aller d'un point A \u00e0 un point B sans entrave me manquent \u00e9norm\u00e9ment.<\/p>\n

QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION ?<\/strong>:<\/p>\n

Finir l'universit\u00e9 apr\u00e8s l'avoir mise en veilleuse pour jouer de la musique et voyager avec mes amis. \u00c9crire une com\u00e9die pour un film ind\u00e9pendant, une s\u00e9rie web et un livre. D\u00e9m\u00e9nager \u00e0 Los Angeles et poursuivre\/accomplir une carri\u00e8re dans le divertissement\/les m\u00e9dias et \u00e9pouser la personne la plus parfaite pour moi au monde.<\/p>\n

COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI : <\/strong><\/p>\n

Il a consid\u00e9rablement am\u00e9lior\u00e9 mes comp\u00e9tences en mati\u00e8re de r\u00e9solution de probl\u00e8mes, me rendant plus ing\u00e9nieux, plus cr\u00e9atif et plus patient. J'ai pu appliquer cela \u00e0 ma carri\u00e8re et \u00e0 d'autres aspects de ma vie, ce qui a fait de moi un meilleur co\u00e9quipier, un meilleur ami, un meilleur mari et une personne plus cr\u00e9ative. Du moins, je pense que c'est le cas et j'esp\u00e8re que d'autres seront d'accord avec moi !<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD : <\/strong><\/p>\n

Un bon d\u00e9but serait de faire savoir au monde entier que cette maladie existe r\u00e9ellement. Qu'il s'agit d'un combat majeur pour les personnes touch\u00e9es, mais que beaucoup d'entre nous m\u00e8nent une vie heureuse et productive, et qu'il existe des traitements et des rem\u00e8des \u00e0 l'horizon, et que nous aimerions que tout le monde nous aide et nous comprenne pour les faire avancer jusqu'\u00e0 la ligne d'arriv\u00e9e.<\/p>\n

SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS SOUHAITERIEZ FAIRE ?<\/strong>:<\/p>\n

J'y pense constamment, alors j'ai d\u00e9j\u00e0 planifi\u00e9 ma journ\u00e9e : J'emm\u00e8nerais mon chien faire une bonne et longue promenade (peut-\u00eatre courir ?). Je porterais toutes les courses au lieu de demander \u00e0 ma petite femme de s'en occuper. Je jouerais au hacky sack avec des \u00e9tudiants et j'essaierais peut-\u00eatre de faire cette \"randonn\u00e9e\" que les gens de Los Angeles semblent tant aimer.<\/p>\n

**********<\/p>\n

Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire en vue d'une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name: Tony \u00a0Age:\u00a0 32 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":1329,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Tony - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/09\/23\/tony\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Tony - 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