{"id":1651,"date":"2018-01-08T10:22:50","date_gmt":"2018-01-08T16:22:50","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1651"},"modified":"2018-01-08T10:22:50","modified_gmt":"2018-01-08T16:22:50","slug":"jill-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Jill"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD Spotlight Interview<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Nom<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0\u00a0<strong>L'\u00e2ge<\/strong>: 33 ans<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1650 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Pays<\/strong>:    \u00c9tats-Unis<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD Sous-type<\/strong>:    LGMD2i<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 27 ans.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u00c0 l'\u00e9cole primaire, j'\u00e9tais toujours le dernier enfant \u00e0 franchir la ligne d'arriv\u00e9e \u00e0 l'\u00e9cole primaire. <\/span>gymnase<span style=\"color: #000000;\">. Je me souviens \u00e9galement d'avoir d\u00fb m'absenter des activit\u00e9s scolaires en raison de douloureuses crampes dans les jambes. Cependant, je faisais partie de l'\u00e9quipe de danse et j'avais une <\/span>super normal<span style=\"color: #000000;\"> l'enfance. Apr\u00e8s la naissance de mon premier enfant en 2008, \u00e0 l'\u00e2ge de 23 ans, j'ai commenc\u00e9 \u00e0 me rendre aux urgences de temps en temps pour des probl\u00e8mes de fatigue et de douleur. Je me souviens avoir dit \u00e0 mon mari : \"Il y a quelque chose qui ne va pas chez moi et un jour, je d\u00e9couvrirai ce que c'est\". Apr\u00e8s la naissance de ma deuxi\u00e8me fille en 2010, j'ai eu du mal \u00e0 supporter les contraintes physiques li\u00e9es \u00e0 la pr\u00e9sence d'un enfant en bas \u00e2ge et d'un nouveau-n\u00e9. Je n'\u00e9tais plus capable de monter un escalier sans effort. Je me disais encore \"peut-\u00eatre que c'est juste ce que ressentent les mamans fatigu\u00e9es\". Puis, en 2011, j'ai \u00e9t\u00e9 victime d'une rhabdomyolyse apr\u00e8s avoir attrap\u00e9 un virus et fait une pouss\u00e9e de fi\u00e8vre. Je suis all\u00e9e chez le m\u00e9decin avec une grande faiblesse et mon taux de CPK \u00e9tait de 11 000. Cela nous a finalement conduits sur la bonne voie et un diagnostic de LGMD2I a \u00e9t\u00e9 d\u00e9couvert. Comme pour beaucoup d'entre vous, le chemin vers le diagnostic a \u00e9t\u00e9 long.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Non, je suis homozygote r\u00e9cessive, donc mes deux parents \u00e9taient porteurs. Heureusement, mon fr\u00e8re et ma s\u0153ur ne sont pas atteints.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Mes filles \u00e9taient des b\u00e9b\u00e9s lorsque j'ai \u00e9t\u00e9 diagnostiqu\u00e9e. Un an plus tard, on a diagnostiqu\u00e9 un cancer du cerveau chez mon mari. Je craignais de ne pas pouvoir m'occuper de ma famille. J'ai pass\u00e9 de nombreuses heures \u00e0 m'inqui\u00e9ter de ce qui allait nous arriver. J'essaie de rester dans le moment pr\u00e9sent et de profiter des bons moments. Il peut \u00eatre difficile de garder la t\u00eate froide et de ne pas anticiper mon d\u00e9clin ou de laisser la frustration et la douleur m'envahir. <\/span>\u00e0<span style=\"color: #000000;\"> lit. Pourtant, je suis l\u00e0, aujourd'hui. Mon mari est l\u00e0, aujourd'hui. Mes enfants sont \u00e9tonnants et r\u00e9silients. Je reste donc reconnaissante et nous continuons.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Ma plus grande r\u00e9ussite personnelle est mon bonheur. J'ai travaill\u00e9 tr\u00e8s dur pour \u00eatre heureuse, malgr\u00e9 les difficult\u00e9s. J'en suis tr\u00e8s fi\u00e8re.  C'est un choix que j'essaie de faire chaque jour.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">J'ai le sentiment de vivre une vie plus significative apr\u00e8s le diagnostic. J'aime mes proches plus intens\u00e9ment. J'ai appris \u00e0 ralentir, parce qu'il le faut, et ce n'est pas une mauvaise fa\u00e7on de vivre. Je suis \u00e9galement reconnaissante d'avoir la possibilit\u00e9 de comprendre et d'avoir de l'empathie pour ceux qui souffrent de maladies chroniques, de douleurs, de chagrin... toutes ces maladies invisibles qui peuvent si facilement \u00eatre interpr\u00e9t\u00e9es \u00e0 tort comme de la paresse ou un manque d'effort. Je vous vois et je suis d\u00e9sol\u00e9e que ce soit difficile.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Je veux que le monde sache que la LGMD est une maladie g\u00e9n\u00e9tiquement h\u00e9r\u00e9ditaire et non une maladie due \u00e0 une \"carence nutritionnelle\" ou au fait de ne pas aller \u00e0 la salle de sport. Ce n'est pas une maladie que l'on choisit. Elle est progressive et il n'y a pas de rem\u00e8de. Rester positif et actif est certes utile, mais cela n'arr\u00eatera pas la progression. \u00c0 mon avis, la meilleure chose \u00e0 dire \u00e0 une personne atteinte de LGMD est : \"Je sais que c'est difficile, mais vous faites du tr\u00e8s bon travail\". Il serait merveilleux de trouver un traitement ou un rem\u00e8de \u00e0 l'avenir. Il est bon de garder espoir.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">J'emm\u00e8ne mes filles \u00e0 l'\u00e9cole \u00e0 dos d'\u00e2ne, j'organise une grande f\u00eate et je fais une balade \u00e0 v\u00e9lo en famille autour de notre lac pr\u00e9f\u00e9r\u00e9.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web. <\/span>\u00e0 <span style=\"color: #000000;\"><a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/fr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">* Merci de LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la LGMD !<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD Spotlight Interview Name:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1650,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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