{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Jillena"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD\nEntretien \"Spotlight\"<\/strong><\/p>\n\n\n\n

Nom<\/strong>: Jillena\n L'\u00e2ge<\/strong>: 32 ans<\/p>\n\n\n\n

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

LGMD Sous-type<\/strong>: LGMD2A - une forme de calpa\u00efnopathie<\/p>\n\n\n\n

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

On m'a diagnostiqu\u00e9 une LGMD \u00e0 l'\u00e2ge de 21 ans.\n\u00e0 l'\u00e2ge de 21 ans. Puis, il y a quelques mois, j'ai re\u00e7u la confirmation g\u00e9n\u00e9tique de mon sous-type LGMD2A.\nconfirmation g\u00e9n\u00e9tique de mon sous-type LGMD2A il y a quelques mois.<\/p>\n\n\n\n

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

Apr\u00e8s la naissance de mon deuxi\u00e8me enfant, j'ai commenc\u00e9 \u00e0 remarquer que les escaliers devenaient difficiles pour moi.\nque les escaliers devenaient difficiles pour moi. En fait, je les montais en rampant. I\nJ'avais une scoliose et j'ai donc attribu\u00e9 mes difficult\u00e9s \u00e0 monter les escaliers \u00e0 la scoliose.\nMais ensuite, j'ai eu mon deuxi\u00e8me enfant et je n'arrivais plus \u00e0 soulever ma jambe jusqu'\u00e0 un trottoir\nfacilement. De plus, j'ai toujours \u00e9t\u00e9 maigre et je n'ai jamais su pourquoi.\net je n'ai jamais su pourquoi. Ma m\u00e8re a craint que quelque chose n'aille pas et m'a convaincue de consulter un m\u00e9decin.\nm\u00e9decin.<\/p>\n\n\n\n

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

Personne d'autre dans ma famille n'a \u00e9t\u00e9 diagnostiqu\u00e9 avec la LGMD, mais ma m\u00e8re avait un fr\u00e8re qui vivait avec un handicap physique. Nous pensons qu'il \u00e9tait atteint de la dystrophie musculaire de Duchenne.<\/p>\n\n\n\n

QUELS SONT, SELON VOUS, LES PLUS GRANDS\nD\u00c9FIS DE LA VIE AVEC UNE LGMD <\/strong>:<\/p>\n\n\n\n

La premi\u00e8re chose est la lutte que ma famille doit mener et qu'elle ne m\u00e8nerait pas si je n'avais pas cette maladie.\nsi je n'\u00e9tais pas atteint de cette maladie. Deuxi\u00e8mement, je ne peux plus aller, aller, aller comme avant.\ncomme avant. Mes bras et mes jambes sont plus faibles, ce qui m'emp\u00eache de faire grand-chose.<\/p>\n\n\n\n

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

Ma plus grande r\u00e9ussite est mon changement d'attitude le plus r\u00e9cent. I\nJ'ai r\u00e9alis\u00e9 que le fait d'\u00eatre n\u00e9gatif \u00e0 propos de ma maladie et de mon destin n'aidait personne. J'ai non seulement d\u00e9cid\u00e9 de vivre ma vie en regardant \u00e0 travers une autre paire de lunettes, mais j'ai \u00e9galement d\u00e9cid\u00e9 de partager cette exp\u00e9rience avec d'autres.\n\u00e0 travers une autre paire de lunettes, mais j'ai \u00e9galement d\u00e9cid\u00e9 de partager ces lunettes avec le monde entier en racontant mon parcours sur une page Facebook.\nJ'ai \u00e9galement d\u00e9cid\u00e9 de partager ces lunettes avec le monde entier \u00e0 travers mon parcours de vie sur une page Facebook que j'ai cr\u00e9\u00e9e.<\/p>\n\n\n\n

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

Une fois que j'ai accept\u00e9 que j'avais cette maladie\net que je n'avais pas \u00e0 \u00eatre malheureuse, j'ai cr\u00e9\u00e9 une page sur Facebook. J'ai commenc\u00e9 \u00e0 donner des conseils sur la fa\u00e7on d'\u00eatre\npositifs. Depuis, c'est devenu beaucoup plus. J'ai maintenant beaucoup d'amis sur Facebook\nqui sont devenus un formidable syst\u00e8me de soutien. En outre, j'ai racont\u00e9 mon histoire lors d'un discours \u00e0 l'occasion de la collecte de fonds Shamrock\nau profit de la MDA. Je me suis \u00e9panouie\nJe me suis \u00e9panouie en une personne qui veut que tout le monde prenne conscience de sa valeur ! Il y a dix ans, je ne\nJe ne me souciais pas de moi, et encore moins de quelqu'un d'autre.<\/p>\n\n\n\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE ?\n\u00c0 PROPOS DU LGDM <\/strong>:<\/p>\n\n\n\n

Je veux que le monde entier sache que la LGMD est une maladie extr\u00eamement difficile \u00e0 vivre, en grande partie parce qu'elle vous prive de votre ind\u00e9pendance.\nextr\u00eamement difficile \u00e0 vivre car elle vous prive de votre ind\u00e9pendance. Avec l'\u00e2ge, les muscles s'affaiblissent, ce qui r\u00e9duit la mobilit\u00e9.\nl'\u00e2ge, les muscles s'affaiblissent, ce qui r\u00e9duit la mobilit\u00e9. C'est difficile,\nsurtout quand on a trois enfants \u00e0 faire courir.<\/p>\n\n\n\n

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

Je ferais de la randonn\u00e9e\ndans les montagnes du Colorado avec ma famille !<\/p>\n\n\n\n

* Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour 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:  Jillena  Age: 32 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jillena - 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\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - 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