{"id":1059,"date":"2015-11-30T11:36:31","date_gmt":"2015-11-30T17:36:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1059"},"modified":"2015-11-30T11:36:31","modified_gmt":"2015-11-30T17:36:31","slug":"molly","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/11\/30\/molly\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Molly"},"content":{"rendered":"

11\/30\/2015<\/p>\n

NOM<\/strong>: Molly\u00a0\u00a0 \u00a0AGE<\/strong>: 29 ans\"LGMD2B<\/a><\/p>\n

PAYS :<\/strong>\u00a0 \u00c9tats-Unis<\/p>\n

LGMD Sous-type<\/strong>: LGMD2B : dysferlinopathie\/myopathie de Miyoshi<\/p>\n

 <\/p>\n

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

J'ai commenc\u00e9 \u00e0 pr\u00e9senter des sympt\u00f4mes \u00e0 l'\u00e2ge de 17 ans et on m'a dit \u00e0 l'\u00e9poque que je souffrais de Guillain-Barre. \u00c0 l'\u00e2ge de 19 ans, mes premiers sympt\u00f4mes sont r\u00e9apparus et se sont aggrav\u00e9s, mais cette fois on m'a diagnostiqu\u00e9 une polymyosite. Apr\u00e8s trois ans d'hospitalisation, on m'a finalement diagnostiqu\u00e9 la myopathie de Miyoshi \u00e0 l'\u00e2ge de 22 ans, gr\u00e2ce \u00e0 un test ADN.<\/p>\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 des difficult\u00e9s \u00e0 monter les escaliers et \u00e0 me lever d'une chaise. Vers l'\u00e2ge de 15 ans, j'ai remarqu\u00e9 une diminution significative de mon activit\u00e9 sportive, mais j'ai mis cela sur le compte de la paresse adolescente. Ce n'est que lorsque j'\u00e9tais en premi\u00e8re ann\u00e9e de lyc\u00e9e, que je n'ai pas pu remplir mes obligations en mati\u00e8re d'\u00e9ducation physique et que j'ai commenc\u00e9 \u00e0 tomber fr\u00e9quemment que j'ai compris qu'il y avait un probl\u00e8me.<\/p>\n

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

Je n'ai pas d'autres membres de ma famille qui soient touch\u00e9s par la LGMD.<\/p>\n

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

L'un des plus grands d\u00e9fis est de voir des amis et des membres de la famille participer \u00e0 des activit\u00e9s physiques telles que la course \u00e0 pied, la randonn\u00e9e, l'exercice quotidien et m\u00eame la danse. Je suis triste de ne pas pouvoir participer avec eux et j'ai parfois l'impression de manquer de temps de qualit\u00e9. Il faut beaucoup plus d'efforts pour se pr\u00e9parer chaque matin et pour accomplir des t\u00e2ches quotidiennes que beaucoup consid\u00e8rent comme allant de soi, comme ranger sa chambre, nettoyer sa maison, faire sa lessive, etc. J'ai d\u00fb apprendre \u00e0 mettre ma fiert\u00e9 de c\u00f4t\u00e9 et \u00e0 compter davantage sur mes amis et ma famille, ce qui est en soi un d\u00e9fi.<\/p>\n

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

Je pense que ma plus grande r\u00e9ussite \u00e0 ce jour est que, malgr\u00e9 mes all\u00e9es et venues \u00e0 l'h\u00f4pital pendant mes ann\u00e9es d'\u00e9tudes, j'ai continu\u00e9 \u00e0 travailler et j'ai finalement obtenu un dipl\u00f4me. Aujourd'hui, je mets ce dipl\u00f4me \u00e0 profit tous les jours en tant qu'enseignante. L'enseignement a toujours \u00e9t\u00e9 mon r\u00eave et je l'ai r\u00e9alis\u00e9. Mes \u00e9l\u00e8ves et mes coll\u00e8gues me soutiennent et cela en vaut la peine chaque jour.<\/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

Le LGMD a fait de moi une personne plus d\u00e9termin\u00e9e. Un but dans ma propre vie, mais aussi un but dans les personnes qui m'entourent. Lorsque vous vivez avec une maladie qui affecte votre vie quotidienne, il est important de vous entourer de personnes et d'activit\u00e9s qui ont un sens et qui remplissent votre vie, et de ne pas perdre de temps avec des choses insignifiantes. Je ne suis pas s\u00fbre que j'en aurais pris conscience aussi t\u00f4t si je n'avais pas v\u00e9cu ce que je vis tous les jours.<\/p>\n

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

Tout d'abord, je voudrais que tout le monde arr\u00eate de penser que j'ai une forme \u00e9trange de scl\u00e9rose en plaques. Je veux aussi que tout le monde sache que nous, en tant que communaut\u00e9, sommes pr\u00e9cieux et avons beaucoup \u00e0 offrir. Nos corps peuvent ne pas coop\u00e9rer avec nous, mais nous sommes une communaut\u00e9 tr\u00e8s brillante et passionn\u00e9e. J'aimerais aussi que le monde sache que la LGMD existe, mais je pense que nous faisons de grands progr\u00e8s dans ce domaine.<\/p>\n

 <\/p>\n

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

Il y a tant de choses que j'aimerais faire et, \u00e9videmment, la plupart d'entre elles sont li\u00e9es \u00e0 des capacit\u00e9s physiques que je ne poss\u00e8de pas. J'aimerais faire une randonn\u00e9e sur le sentier des Appalaches, ou toute autre activit\u00e9 qui implique de rester \u00e0 l'ext\u00e9rieur pendant de longues p\u00e9riodes. O, et j'aimerais aussi sauter \u00e0 nouveau, il y a quelque chose de lib\u00e9rateur l\u00e0-dedans.<\/p>\n

Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

11\/30\/2015 NAME:\u00a0 Molly\u00a0\u00a0 \u00a0AGE: 29 years old COUNTRY:\u00a0 United States […]<\/p>","protected":false},"author":1,"featured_media":1060,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1059","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Molly - 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\/2015\/11\/30\/molly\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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