{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Natasha"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"SPOTLIGHT INTERVIEW\"<\/h3>\n\n\n\n

Nom<\/strong>: Natasha \nL'\u00e2ge<\/strong>:\n25 ans<\/p>\n\n\n\n

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

LGMD Sous-type<\/strong>: LGMD D1 li\u00e9e \u00e0 l'ADNJB6 (anciennement LGMD type\n1D)<\/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 23 ans.<\/p>\n\n\n\n

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

Notre sous-type est d'apparition tardive et je n'ai donc actuellement aucun sympt\u00f4me, bien qu'en grandissant il y ait eu des petites choses qui ont plus de sens maintenant que je sais que je suis diagnostiqu\u00e9e. En grandissant, je ne pouvais pas courir aussi vite que mes camarades et j'avais du mal, en danse, \u00e0 me lever du sol sans utiliser mes mains, par exemple.<\/p>\n\n\n\n

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

Oui, mon p\u00e8re, mon oncle (du c\u00f4t\u00e9 de mon p\u00e8re) et mon grand-p\u00e8re paternel ont tous le m\u00eame diagnostic.\npaternel ont tous le m\u00eame diagnostic.<\/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

Le plus grand d\u00e9fi pour moi a \u00e9t\u00e9 de savoir qu'un jour\nma mobilit\u00e9 sera moindre qu'aujourd'hui et que je ne pourrai peut-\u00eatre pas continuer \u00e0\nle mode de vie actif que j'aime mener actuellement.<\/p>\n\n\n\n

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

Je ne suis pas s\u00fbre de ma plus grande r\u00e9ussite... je dirais les liens familiaux et amicaux que j'ai maintenus. De plus, la communaut\u00e9 que nous avons cr\u00e9\u00e9e et que nous continuons de cr\u00e9er pour les formes dominantes de la dystrophie musculaire des ceintures gr\u00e2ce \u00e0 la fondation LGMD-1D DNAJB6, une fondation publique \u00e0 but non lucratif dont la mission est de maintenir un lieu central o\u00f9 les personnes ayant re\u00e7u un diagnostic de dystrophie musculaire des ceintures de type 1D (LGMD1D) peuvent se rencontrer, regrouper les informations pertinentes et lancer des campagnes de collecte de fonds afin de faire avancer la recherche.  https:\/\/lgmd1d.org<\/a>  Nous avons \u00e9galement cr\u00e9\u00e9 un registre de patients pour tous les patients chez qui une forme autosomique dominante de LGMD a \u00e9t\u00e9 diagnostiqu\u00e9e.  <\/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

Je pense toujours \u00e0 l'avenir, \u00e0 l'impact de mes actions sur mon corps, sur les gens que j'aime et sur la famille que j'esp\u00e8re \u00e9lever.\nmes actions auront un impact sur mon corps, sur les gens que j'aime et sur la famille que j'esp\u00e8re \u00e9lever. Cela m'a pouss\u00e9 \u00e0 prendre patience et \u00e0 essayer de mener un style de vie moins intense physiquement.\nd'adopter un mode de vie moins intense sur le plan physique.<\/p>\n\n\n\n

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

Nous devons continuer\n\u00e0 faire passer le message et \u00e0 nous connecter de mani\u00e8re \u00e0 contribuer \u00e0 la d\u00e9couverte d'un rem\u00e8de. Par exemple, un registre des patients atteints de LGMD\n(LGMD de type 1) sera essentiel \u00e0 la recherche et \u00e0 la d\u00e9couverte d'un rem\u00e8de.<\/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

Si j'\u00e9tais gu\u00e9rie demain, j'irais danser pour f\u00eater \u00e7a ! <\/p>\n\n\n\n

\n\n\n\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 “SPOTLIGHT INTERVIEW” Name:  Natasha  Age: 25 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Natasha - 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\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Natasha - 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