{"id":3558,"date":"2020-09-04T10:02:29","date_gmt":"2020-09-04T15:02:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3558"},"modified":"2024-02-09T14:24:33","modified_gmt":"2024-02-09T14:24:33","slug":"tatyana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/09\/04\/tatyana\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Tatyana"},"content":{"rendered":"

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

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

Nom<\/strong>: Tatyana   L'\u00e2ge<\/strong>: 33 ans<\/p>\n\n\n\n

Pays<\/strong>: Russie<\/p>\n\n\n\n

LGMD Sous-type<\/strong>: LGMD 2A \/ R1 Li\u00e9e \u00e0 la calpa\u00efne3<\/p>\n\n\n\n

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

On m'a diagnostiqu\u00e9 un sous-type inconnu de LGMD \u00e0 l'\u00e2ge de 14-15 ans. \u00c0 l'\u00e2ge de 27 ou 28 ans, mon diagnostic a \u00e9t\u00e9 confirm\u00e9 g\u00e9n\u00e9tiquement.<\/p>\n\n\n\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 des difficult\u00e9s \u00e0 courir, \u00e0 monter les escaliers et je n'ai jamais pu faire de tractions.<\/p>\n\n\n\n

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

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

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

L'acceptation \u00e9tait bien plus difficile que le handicap physique. Vous \u00eates rare, vous \u00eates diff\u00e9rent. Vous n'appartenez \u00e0 aucun groupe social commun. Vous n'avez personne qui puisse partager son exp\u00e9rience et vous aider. Gr\u00e2ce \u00e0 Internet, j'ai rencontr\u00e9 des personnes atteintes de diff\u00e9rents types de dystrophie musculaire et qui savent ce que l'on ressent. Je comprends maintenant l'importance de faire partie d'une communaut\u00e9 o\u00f9 l'on peut trouver du soutien.<\/p>\n\n\n\n

Le deuxi\u00e8me d\u00e9fi est le manque d'accessibilit\u00e9. Je dois toujours planifier chacun de mes pas, chacun de mes itin\u00e9raires.<\/p>\n\n\n\n

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

Je ne sais pas J Ma vie est tout \u00e0 fait ordinaire : Je travaille, j'apprends de nouvelles choses. J'aime ma famille et mes amis. Je pense que ma plus grande r\u00e9ussite est d'avoir surmont\u00e9 ma peur d'\u00eatre d\u00e9pendante \u00e0 cause de la perte progressive de mes forces. Cela ne me fait plus peur. Aujourd'hui, je cherche simplement des moyens de rendre ma vie avec la LGMD plus facile.<\/p>\n\n\n\n

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

Cela m'a profond\u00e9ment chang\u00e9. J'ai plus d'empathie, je suis plus tol\u00e9rant. J'accorde de l'importance \u00e0 des choses que l'on consid\u00e8re habituellement comme allant de soi.<\/p>\n\n\n\n

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

Je veux que le monde sache que le LGMD est une maladie progressive et qu'il faut du temps pour s'y habituer. Et je veux que le monde sache que la vie avec le LGMD peut \u00eatre pleine de bonheur comme n'importe quelle autre vie.<\/p>\n\n\n\n

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

Je danserais la valse ! Et aussi je courrais ! Les deux choses - aussi vite que possible pour sentir le vent !<\/p>\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 : http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name:  Tatyana   Age: 33 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-3558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Tatyana - 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\/09\/04\/tatyana\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Tatyana - 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