{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Jade"},"content":{"rendered":"

\"<\/p>\n

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

Nom<\/strong>: Jade<\/p>\n

L'\u00e2ge<\/strong>: 20 ans<\/p>\n

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

LGMD Sous-type<\/strong>: LGMD 2A\/R1 li\u00e9 \u00e0 la calpa\u00efne 3<\/p>\n

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

J'ai \u00e9t\u00e9 officiellement diagnostiqu\u00e9e en mars 2021, donc tout cela est encore nouveau pour moi.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers SYMPT\u00d4MES ?<\/strong><\/p>\n

La premi\u00e8re fois que j'ai remarqu\u00e9 des sympt\u00f4mes, j'ai pens\u00e9 que j'\u00e9tais simplement d\u00e9shydrat\u00e9e. Je me sentais faible, j'avais les jambes comme de la gel\u00e9e et des douleurs dans les hanches. Maintenant que je sais que j'ai \u00e9t\u00e9 diagnostiqu\u00e9e, je peux regarder en arri\u00e8re et voir des sympt\u00f4mes qui remontent \u00e0 l'\u00e2ge de 12 ans. Je jouais au softball et je n'arrivais pas \u00e0 faire courir mes jambes rapidement, quels que soient mes efforts. J'ai toujours eu des mollets anormalement gros, mais je sais maintenant que cela peut \u00eatre d\u00fb \u00e0 un manque de force musculaire dans les quadriceps.<\/p>\n

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

Non, je suis la seule personne de ma famille \u00e0 \u00eatre atteinte de LGMD2A\/R1.<\/p>\n

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

Les escaliers m'emp\u00eachent de faire beaucoup de choses. Je peux encore monter les escaliers, mais cela me demande tellement d'efforts et d'\u00e9nergie. Cela n'en vaut pas la peine. Je dois \u00e9galement apprendre \u00e0 adapter ma vie quotidienne, par exemple en ayant une chaise pour m'asseoir et me reposer lorsque je cuisine, en m'asseyant par terre pour tenir les enfants au lieu de les prendre dans mes bras, et en limitant le nombre de choses que je fais dans une journ\u00e9e. Le plus grand obstacle que j'ai rencontr\u00e9 est la difficult\u00e9 mentale li\u00e9e \u00e0 mon fauteuil \u00e9lectrique. Je sais que je dois l'utiliser, mais il y a une barri\u00e8re mentale qui n'a pas encore accept\u00e9 mon diagnostic.<\/p>\n

Quelle est votre plus grande R\u00c9ALISATION ?<\/strong><\/p>\n

Mes relations et le fait d'avoir toujours une vision positive de la vie. J'ai termin\u00e9 l'\u00e9cole secondaire, mais j'ai eu des probl\u00e8mes de diagnostic par la suite, donc je n'ai pas encore pu aller \u00e0 l'universit\u00e9, mais c'est un de mes objectifs.<\/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

Cela m'a permis d'\u00eatre plus conscient de moi-m\u00eame et de m'auto-\u00e9duquer. Je suis plus \u00e0 l'\u00e9coute de mon corps maintenant, je peux dire si je suis en rhabdomyolyse, si je suis en train de travailler ou si j'ai juste besoin de me reposer. En raison du manque de recherche sur la LGMD, il faut beaucoup d'autodidaxie et de sensibilisation. Comme je vis dans une communaut\u00e9 semi-rurale, aucun m\u00e9decin n'avait la moindre id\u00e9e de ce qu'il fallait faire pour moi ou de ce que j'avais. Aujourd'hui, je peux appeler mon m\u00e9decin traitant, lui dire ce qui se passe et il me traitera en cons\u00e9quence.<\/p>\n

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

La LGMD ne se pr\u00e9sente pas de la m\u00eame mani\u00e8re chez tout le monde. Tout le monde ne sera pas ambulatoire et tout le monde ne sera pas en fauteuil roulant. De m\u00eame, tout le monde n'a pas re\u00e7u un diagnostic pr\u00e9coce et certaines personnes n'en ont jamais re\u00e7u (m\u00eame si c'est plus facile aujourd'hui). Tout le monde ne prend pas bien le diagnostic et n'avance pas avec confiance, et tout le monde ne tombe pas dans la spirale \u00e0 cause du diagnostic. Ne pr\u00e9sumez jamais que vous savez ce que quelqu'un traverse physiquement et mentalement.<\/p>\n

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

La premi\u00e8re chose que j'aimerais faire, c'est partir en vacances ou en voyage aventureux. Ce n'est pas pratique pour moi maintenant, mais j'ai toujours voulu aller au Grand Canyon, \u00e0 Yosemite, au point le plus haut des Appalaches et aux volcans d'Hawa\u00ef.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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\/2021\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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