{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"INDIVIDU AVEC LGMD : John"},"content":{"rendered":"

\"<\/p>\n

Nom<\/strong>: Jean\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 L'\u00e2ge<\/strong>: 28 ans<\/p>\n

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

LGMD Sous-type<\/strong>: LGMD 2J\/R10 li\u00e9 \u00e0 la titine<\/p>\n

 <\/p>\n

\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>?<\/p>\n

\u00c0 l'\u00e2ge de 10 ans, on m'a diagnostiqu\u00e9 la maladie de Becker. Vers l'\u00e2ge de 11 ou 12 ans, on m'a ensuite diagnostiqu\u00e9 une myopathie mitochondriale. En 2016, on m'a diagnostiqu\u00e9 une LGMD et la LGMD2J\/R10 a finalement \u00e9t\u00e9 confirm\u00e9e g\u00e9n\u00e9tiquement en 2021.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers SYMPT\u00d4MES ?<\/strong><\/p>\n

Vers l'\u00e2ge de 5 ans, j'ai eu des difficult\u00e9s \u00e0 marcher correctement. Je ressentais d'\u00e9normes douleurs au mollet lorsque je faisais de l'exercice et j'avais du mal \u00e0 suivre les autres enfants.<\/p>\n

Avez-vous d'autres membres de votre famille qui sont atteints de LGMD ?<\/strong><\/p>\n

Mon fr\u00e8re est \u00e9galement atteint de LGMD2J.<\/p>\n

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>?<\/p>\n

Les plus grands d\u00e9fis sont la perte de la capacit\u00e9 \u00e0 faire les choses que j'aime et le fait de devoir trouver de nouveaux passe-temps \u00e0 plusieurs reprises en raison de la faiblesse progressive. C'est difficile \u00e0 g\u00e9rer. Aujourd'hui, je constate \u00e9galement que les activit\u00e9s quotidiennes sont difficiles, voire impossibles \u00e0 r\u00e9aliser de mani\u00e8re autonome sans l'aide de ma merveilleuse \u00e9pouse, Christina. Malheureusement, en raison de la nature de mon handicap et du dispositif de mobilit\u00e9 que j'utilise, je fais souvent l'objet de discriminations et l'acc\u00e8s \u00e0 certains lieux publics m'est refus\u00e9.<\/p>\n

Quelle est votre plus grande R\u00c9ALISATION ?<\/strong><\/p>\n

J'ai \u00e9pous\u00e9 ma belle femme, Christina, et j'ai obtenu une licence en chimie.<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/p>\n

La maladie a vraiment fa\u00e7onn\u00e9 la personne que je suis aujourd'hui, en me mettant au d\u00e9fi, en me permettant de rencontrer d'autres personnes de la communaut\u00e9 des personnes handicap\u00e9es et en me poussant \u00e0 devenir l'avocate que je suis aujourd'hui. Le fait d'\u00eatre limit\u00e9 dans mes capacit\u00e9s physiques m'a rendu plus cr\u00e9atif dans la r\u00e9solution de probl\u00e8mes et m'a beaucoup appris sur la patience. J'ai parfois l'impression que la maladie m'assomme, mais il est important pour moi de me rappeler que je ne suis pas seule dans la lutte pour un v\u00e9ritable traitement des maladies comme la mienne.<\/p>\n

Que voulez-vous que le monde sache sur le LGMD ?<\/strong>?<\/p>\n

J'aimerais que l'on prenne davantage conscience de l'impact qu'une maladie comme la LGMD peut avoir sur la vie d'une personne, sur sa sant\u00e9 mentale et sur ses attentes. Je souhaite que les autres prennent conscience de la gravit\u00e9 de l'\u00e9volution de la maladie, mais aussi de l'importance du combat que nous devons tous mener un jour ou l'autre contre les maladies chroniques et rares.<\/p>\n

Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>?<\/p>\n

Sans h\u00e9siter, j'enfourcherais une moto tout-terrain et je roulerais pendant des jours ! Je faisais beaucoup de v\u00e9lo quand j'\u00e9tais plus jeune, mais je ne suis plus assez fort. J'y pense encore tous les jours.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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