{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Maria"},"content":{"rendered":"
\"Lgmd1b<\/span><\/div>

\u00a0<\/strong><\/p>\n

Nom<\/strong>: Maria L'\u00e2ge<\/strong>: 29 ans<\/p>\n

Pays<\/strong>: \u00c9TATS-UNIS<\/p>\n

LGMD Sous-type<\/strong>: LGMD 1B<\/p>\n

 <\/p>\n

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

On m'a d'abord diagnostiqu\u00e9 une SMA \u00e0 l'\u00e2ge de deux ans. On m'a ensuite diagnostiqu\u00e9 une dystrophie musculaire des ceintures \u00e0 l'\u00e2ge de 15 ans.<\/p>\n

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

Mes parents m'ont dit que je ne marchais pas avant l'\u00e2ge de 17 mois. Je marchais \u00e9galement en me dandinant et j'utilisais mes bras pour m'aider \u00e0 me lever d'une position assise lorsque j'\u00e9tais tout petit.<\/p>\n

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

Non, je suis la seule personne de ma famille \u00e0 \u00eatre atteinte de LGMD.<\/p>\n

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

Sur le plan mental : L'hypoth\u00e8se selon laquelle nous ne vivons pas une vie normale est le plus grand d\u00e9fi pour moi. Physiquement : Apprendre \u00e0 accepter la progression lorsque je remarque que quelque chose s'est affaibli.<\/p>\n

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

J'ai obtenu mon permis et ma propre voiture. Le processus a dur\u00e9 deux longues ann\u00e9es. J'avais l'impression qu'il n'y avait jamais de fin en vue. Le fait d'avoir ma voiture a chang\u00e9 ma vie et m'aide \u00e0 rester aussi ind\u00e9pendante que possible.<\/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

Cela a d\u00e9finitivement fa\u00e7onn\u00e9 ma personnalit\u00e9 et ce que je suis. Ma personnalit\u00e9 f\u00e9roce vient de ma d\u00e9termination \u00e0 montrer aux autres que nous sommes capables. Mon c\u00f4t\u00e9 passionn\u00e9 vient du fait que je me suis battue depuis le premier jour, m\u00eame quand j'\u00e9tais enfant. Grandir avec un handicap m'a fa\u00e7onn\u00e9 de bien des mani\u00e8res que je ne pourrais imaginer. Je sais que cette maladie a fait de moi la Maria que tout le monde conna\u00eet.<\/p>\n

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

Je veux que les gens sachent qu'il s'agit d'une maladie rare et qu'il n'existe donc aucun traitement ou rem\u00e8de. Je veux aussi crier sur tous les toits que ce n'est pas la scl\u00e9rose en plaques !<\/p>\n

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

Je courrais chercher mes cinq ni\u00e8ces et neveux. J'irais au centre commercial pour choisir une tenue sans avoir \u00e0 me soucier d'\u00eatre trop maigre pour entrer dans quoi que ce soit. Et puis j'irais probablement faire du putt putt. C'est vraiment quelque chose qui me manque et qui faisait partie int\u00e9grante de mon enfance. Mon p\u00e8re nous emmenait, mes s\u0153urs et moi, presque chaque semaine lorsque nous \u00e9tions enfants, et c'est devenu l'une de mes activit\u00e9s pr\u00e9f\u00e9r\u00e9es.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD:\u00a0 Maria - 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\/2021\/05\/17\/5172\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD:\u00a0 Maria - 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