{"id":1378,"date":"2016-10-11T11:29:46","date_gmt":"2016-10-11T16:29:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1378"},"modified":"2016-10-11T11:29:46","modified_gmt":"2016-10-11T16:29:46","slug":"anna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Anna"},"content":{"rendered":"

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

Nom<\/strong>: Anna \u00a0\u00a0L'\u00e2ge<\/strong>: 36 ans\"lgmd2i-anna\"<\/a><\/p>\n

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

LGMD Sous-type<\/strong>: LGMD2I<\/p>\n

 <\/p>\n

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

On m'a d'abord diagnostiqu\u00e9 une \"myopathie musculaire non sp\u00e9cifique\" lorsque j'\u00e9tais jeune enfant (\u00e0 l'\u00e9poque de l'\u00e9cole primaire). Plus tard, \u00e0 l'\u00e2ge de 26 ans, j'ai re\u00e7u un \"diagnostic de travail\" de LGMD. Enfin, \u00e0 l'\u00e2ge de 36 ans, j'ai re\u00e7u un diagnostic officiel\/clinique de LGMD 2I par le biais d'un test g\u00e9n\u00e9tique.<\/p>\n

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

Je ne sais pas vraiment quels ont \u00e9t\u00e9 mes premiers sympt\u00f4mes car, bien que je sois atteinte de cette maladie depuis ma naissance, mes parents ne m'en ont jamais parl\u00e9. Ils pensaient que mes sympt\u00f4mes n'avaient pas d'impact m\u00e9dical sur ma vie et qu'il n'\u00e9tait donc pas n\u00e9cessaire de s'y attarder. En y repensant, si je devais deviner, mes premiers sympt\u00f4mes (pour autant que je m'en souvienne) \u00e9taient la marche sur les orteils et des mollets douloureux. Je me souviens \u00e9galement que je ne pouvais pas participer facilement \u00e0 certaines activit\u00e9s sportives comme la course de fond et la gymnastique.<\/p>\n

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

J'ai trois fr\u00e8res. Il est int\u00e9ressant de noter que les deux fr\u00e8res les plus proches de moi en \u00e2ge sont atteints de LGMD, mais que mon plus jeune fr\u00e8re (qui a sept ans de moins) n'est pas du tout affect\u00e9 et est m\u00eame extr\u00eamement athl\u00e9tique.<\/p>\n

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

Pour moi, le premier grand d\u00e9fi est l'\u00e9volution constante des besoins li\u00e9s \u00e0 cette maladie - il est parfois difficile de suivre le rythme ! Par exemple, on s'habitue \u00e0 faire une certaine t\u00e2che d'une certaine mani\u00e8re et soudain, un jour, on ne peut plus la faire de cette mani\u00e8re (ou on peut d\u00e9couvrir qu'on ne peut plus faire cette t\u00e2che du tout). De m\u00eame, vous achetez un \u00e9quipement pour vous aider et cela fonctionne pendant un certain temps, puis vous arrivez \u00e0 un point o\u00f9 il n'est plus utile et vous devez soit acheter un autre \u00e9quipement, soit penser \u00e0 autre chose.<\/p>\n

Pour moi, le deuxi\u00e8me plus grand d\u00e9fi de la vie avec le LGMD est de ne pas savoir comment cette maladie affectera votre avenir. Chaque personne \u00e9volue diff\u00e9remment, \u00e0 des degr\u00e9s et \u00e0 des rythmes diff\u00e9rents. Il est donc difficile d'anticiper ses besoins futurs ou de planifier son avenir, car physiquement, on ne sait pas dans quel \u00e9tat on se trouvera.<\/p>\n

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

Je travaille tr\u00e8s dur pour vivre une vie bien remplie, il m'est donc difficile de citer un accomplissement. Parfois, lorsque je vis avec une maladie, le simple fait de sortir du lit me semble \u00eatre ma plus grande r\u00e9ussite. S\u00e9rieusement, je suis la m\u00e8re de deux enfants (l'un biologique et l'autre adopt\u00e9) et les voir grandir me procure une immense joie et un grand sentiment d'accomplissement. J'ai \u00e9galement \u00e9t\u00e9 pr\u00eatre de paroisse pendant pr\u00e8s de dix ans et j'ai donc eu le grand honneur d'accompagner des personnes dans leurs moments les plus difficiles. Savoir que j'ai pu les aider \u00e0 traverser cette p\u00e9riode difficile (m\u00eame si ce n'est que dans une faible mesure) me procure un sentiment de fiert\u00e9.<\/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 influenc\u00e9 ma vie \u00e0 bien des \u00e9gards. Elle m'a appris \u00e0 m'adapter \u00e0 mon environnement. Je pense que lorsqu'on vit avec cette maladie, on apprend naturellement \u00e0 sortir des sentiers battus.<\/p>\n

Il m'a \u00e9galement appris \u00e0 ne pas m'attarder, car lorsque vous vous attardez, vous vous sentez \"coinc\u00e9\", ce qui n'est ni utile ni sain. Le LGMD m'a \u00e9galement donn\u00e9 le don d'appr\u00e9cier toutes les petites choses de la vie. Plus important encore, le LGMD m'a donn\u00e9 la capacit\u00e9 de ne pas me prendre au s\u00e9rieux. Ma fille cadette me dit r\u00e9guli\u00e8rement que je suis \"gaffeuse\" et cela me convient - la vie est trop courte et trop incertaine pour ne pas faire une pause et rire un bon coup. L'une de mes devises est la suivante : \"Si le plan A ne fonctionne pas, il y a vingt-cinq autres lettres dans l'alphabet ! J<\/p>\n

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

Cette maladie affecte tout le monde diff\u00e9remment et m\u00eame la m\u00eame personne est affect\u00e9e diff\u00e9remment en fonction de la journ\u00e9e et de l'environnement. Parfois, une t\u00e2che apparemment simple et banale pour une personne valide peut sembler insurmontable pour une personne atteinte de M.D. en raison du processus et\/ou des obstacles physiques impliqu\u00e9s. Tout ce que je peux dire au monde, aux amis, \u00e0 la famille et aux soignants, c'est qu'il est important d'aimer et de soutenir les personnes atteintes de M.D., non seulement physiquement, mais aussi \u00e9motionnellement et psychologiquement, m\u00eame si vous ne comprenez pas compl\u00e8tement ce qu'elles ressentent et pourquoi.<\/p>\n

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

Si je me r\u00e9veillais aujourd'hui et que je n'avais aucun sympt\u00f4me, je me rendrais sans aucun doute directement \u00e0 la plage !<\/p>\n

 <\/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":"

LGMD SPOTLIGHT INTERVIEW Name:\u00a0 Anna \u00a0\u00a0Age: \u00a0\u00a036 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[38,36],"class_list":["post-1378","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-canada","tag-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anna - 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\/2016\/10\/11\/anna\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anna - 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