{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Personne atteinte de LGMD : Tasha"},"content":{"rendered":"

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Nom<\/strong>: Tasha              L'\u00e2ge<\/strong>: 46<\/p>\n\n\n\n

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

LGMD Sous-type<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 13 ans, mais j'avais des probl\u00e8mes depuis l'\u00e2ge de 8 ans.\ndepuis l'\u00e2ge de 8 ans. On m'a dit qu'il s'agissait de douleurs de croissance, puis plusieurs diagnostics erron\u00e9s ont \u00e9t\u00e9 pos\u00e9s.\ndes douleurs de croissance, puis plusieurs diagnostics erron\u00e9s ont \u00e9t\u00e9 pos\u00e9s. \u00c0 l'\u00e2ge de 13 ans, on a examin\u00e9 mes taux sanguins\nmes taux sanguins ont \u00e9t\u00e9 examin\u00e9s et ils \u00e9taient hors norme.<\/p>\n\n\n\n

Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n\n\n\n

J'ai ressenti une faiblesse et d'horribles douleurs dans les deux\napr\u00e8s avoir fait de l'exercice.<\/p>\n\n\n\n

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

Oui, mon jeune fr\u00e8re a re\u00e7u le m\u00eame diagnostic de LGMD2L. Son \u00e9volution et son niveau d'atrophie musculaire\net un niveau d'atrophie musculaire totalement diff\u00e9rents. Ma s\u0153ur\ns\u0153ur a\u00een\u00e9e n'est pas atteinte. Mes deux\nparents \u00e9taient porteurs.<\/p>\n\n\n\n

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever\ndans la vie avec le LGMD<\/strong>:<\/p>\n\n\n\n

Mes plus grands d\u00e9fis avec cette maladie sont la fatigue et la douleur.\nla douleur. Et l'incompr\u00e9hension des gens.<\/p>\n\n\n\n

Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n\n\n\n

Continuer \u00e0 travailler et \u00e0 faire de l'exercice tous les jours.<\/p>\n\n\n\n

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

D\u00e9pends ! Cela m'a permis de d\u00e9fendre mes int\u00e9r\u00eats et ma sant\u00e9. On m'a dit que je serais en fauteuil roulant \u00e0 l'\u00e2ge adulte, si ce n'est plus t\u00f4t. On m'a \u00e9galement dit de planifier ma carri\u00e8re en cons\u00e9quence. Puis on m'a dit d'arr\u00eater tous mes sports et activit\u00e9s. \u00c0 13 ans, cela a eu de profondes r\u00e9percussions sur mon enfance, car je faisais beaucoup de sport et j'\u00e9tais tr\u00e8s dou\u00e9e, surtout en football. Pour ne pas me rendre fou, j'ai ignor\u00e9 le conseil du m\u00e9decin et je l'ai fait quand m\u00eame. J'ai jou\u00e9 au football \u00e0 l'universit\u00e9 et apr\u00e8s. Je crois que cela m'a aid\u00e9 \u00e0 am\u00e9liorer mon attitude et mon bien-\u00eatre physique. J'ai souvent eu mal et j'ai eu du mal \u00e0 marcher par la suite, mais je pense que dans l'ensemble, cela m'a aid\u00e9 \u00e0 rester en bonne sant\u00e9 et \u00e0 garder mes muscles actifs. Je fais toujours de l'exercice et des activit\u00e9s de plein air, mais le temps de r\u00e9cup\u00e9ration est plus long. Je suis comptable et je pense que c'est en partie gr\u00e2ce \u00e0 mes capacit\u00e9s. Je pense que le LGMD a fait de moi une personne plus forte dans l'ensemble. <\/p>\n\n\n\n

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

Tout d'abord, bien que la sensibilisation ait \u00e9t\u00e9 mise en avant, surtout en ce qui concerne la dystrophie musculaire de Duchenne, c'est principalement gr\u00e2ce au T\u00e9l\u00e9thon de Jerry Lewis qui a lieu chaque ann\u00e9e. Il existe de nombreuses autres formes de dystrophie musculaire que des personnes comme moi ont....qui n\u00e9cessitent \u00e9galement des recherches. Des gens souffrent et il n'y a pas de rem\u00e8de ! Par ailleurs, j'ai remarqu\u00e9 qu'avec la LGMD, il n'est pas toujours \u00e9vident que les gens aient un handicap. Meaning....J'ai l'air tout \u00e0 fait normal mais j'ai plusieurs probl\u00e8mes que les gens ne reconnaissent pas. Comme je ne suis pas en fauteuil roulant, certains pensent que je fais semblant. Je ne peux plus monter les escaliers et j'ai d\u00fb refuser de nombreuses offres d'emploi parce qu'il n'y avait pas d'ascenseur.<\/p>\n\n\n\n

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

Je le dirais au monde entier.....<\/p>\n\n\n\n

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

* * * Veuillez LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la maladie.\n\u00e0 la LGMD !
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Tasha              Age: 46 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":2782,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49,1],"tags":[93],"class_list":["post-2781","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l","category-uncategorized","tag-lgmd2l-united-states"],"acf":[],"yoast_head":"\nIndividual with LGMD: Tasha - 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=\"http:\/\/www.lgmd-info.org\/fr\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: Tasha - 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