{"id":8006,"date":"2024-04-19T15:18:17","date_gmt":"2024-04-19T15:18:17","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8006"},"modified":"2024-04-19T15:27:01","modified_gmt":"2024-04-19T15:27:01","slug":"8006","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2024\/04\/19\/8006\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Amanda"},"content":{"rendered":"

\"\"<\/p>\n

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

L'\u00e2ge<\/strong>: 26<\/p>\n

Pays<\/strong>: \u00c9TATS-UNIS<\/p>\n

LGMD Sous-type<\/strong>: LGMD2B\/R2 li\u00e9 \u00e0 la dysferline<\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 14 ans.<\/p>\n

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

Mes premiers sympt\u00f4mes ne sont apparus qu'\u00e0 l'\u00e2ge de 20 ans environ. C'est \u00e0 ce moment-l\u00e0 que j'ai commenc\u00e9 \u00e0 remarquer des sympt\u00f4mes de faiblesse\/atrophie musculaire. Je l'ai surtout remarqu\u00e9 dans les situations o\u00f9 je devais utiliser la moiti\u00e9 inf\u00e9rieure de mon corps, comme les escaliers ou les accroupissements. \u00c0 ma grande surprise, j'ai \u00e9galement ressenti des douleurs importantes dans les genoux. Je sais maintenant qu'il y a \u00e9galement une atrophie musculaire \u00e0 ce niveau.<\/p>\n

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

Ce n'est pas le cas.<\/p>\n

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

Mes plus grands d\u00e9fis ont beaucoup chang\u00e9 au cours des derni\u00e8res ann\u00e9es. J'ai la chance d'\u00eatre encore ambulatoire, m\u00eame si j'ai des probl\u00e8mes de mobilit\u00e9.<\/p>\n

Pour l'instant, je dirais que mon plus grand d\u00e9fi est le suivant physiquement<\/em> est l'impr\u00e9visibilit\u00e9 de mes pouss\u00e9es et de mes douleurs. L'apparition rapide de la fatigue, de la raideur et de la douleur rend parfois le travail et la vie tr\u00e8s difficiles.<\/p>\n

Mes plus grands d\u00e9fis sur le plan \u00e9motionnel <\/em>serait le myst\u00e8re de l'avenir et la question de savoir si je verrai un rem\u00e8de de mon vivant. Cette question me traverse l'esprit minute apr\u00e8s minute. Au fil des ans, j'ai \u00e9galement eu beaucoup de mal \u00e0 sensibiliser mes \u00e9quipes m\u00e9dicales \u00e0 la LGMD. En dehors de mes m\u00e9decins sp\u00e9cialistes, les autres m\u00e9decins, les infirmi\u00e8res et le personnel m\u00e9dical n'ont g\u00e9n\u00e9ralement aucune id\u00e9e de ce qu'est cette maladie, ce qui est incroyablement \u00e9puisant du point de vue du patient.<\/p>\n

Quel est votre <\/strong>sa plus grande r\u00e9ussite ?<\/strong><\/p>\n

Lorsqu'on m'a diagnostiqu\u00e9 une LGMD, j'ai d\u00fb abandonner tous les sports que je pratiquais, car les m\u00e9decins s'inqui\u00e9taient de mon taux de CK et ne savaient pas ce que je risquais de faire de plus. La LGMD 2B \u00e9tait encore incroyablement nouvelle en 2012. J'\u00e9tais tr\u00e8s sportive, et l'arr\u00eat du sport m'a an\u00e9antie. Mais j'ai d\u00e9cid\u00e9 de mettre toute cette \u00e9nergie dans la cr\u00e9ation artistique et de faire grandir mon amour de l'art. J'ai fini par trouver toutes sortes de formes d'art qui m'int\u00e9ressaient, et j'ai fini par en poursuivre une comme carri\u00e8re.<\/p>\n

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

Outre l'influence de la LGMD sur ma carri\u00e8re, je dirais qu'elle a \u00e9galement beaucoup chang\u00e9 mon \u00e9tat d'esprit. Aussi injuste que cela puisse \u00eatre, et c'est TELLEMENT injuste, les personnes atteintes de LGMD n'ont pas d'autre choix que d'adapter leur \u00e9tat d'esprit si elles veulent trouver le bonheur au milieu de cette maladie. Je travaille toujours sur ma sant\u00e9 mentale dans ce domaine, et j'ai d\u00e9couvert que la th\u00e9rapie et une communaut\u00e9 de soutien ont beaucoup chang\u00e9 la donne.<\/p>\n

R\u00e9cemment, j'ai donc d\u00e9cid\u00e9 de lancer un blog : HerChronicWellness.com<\/a> o\u00f9 je partage des moments de mon parcours chronique afin de rendre le parcours chronique des autres un peu plus facile. Je lance \u00e9galement une section \"En vedette\", pour que d'autres puissent partager leurs histoires et leurs conseils sur la maladie chronique. N'h\u00e9sitez pas \u00e0 y jeter un coup d'\u0153il !<\/p>\n

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

Je veux que le monde sache tout<\/em> sur la LGMD ! Mais surtout que le temps est un facteur essentiel. Il s'agit d'une maladie \u00e9volutive incurable. Tous les cas de LGMD sont diff\u00e9rents, et je me consid\u00e8re comme un cas incroyablement chanceux. Des gens souffrent et le seul moyen de trouver un rem\u00e8de est de sensibiliser et d'\u00e9duquer les membres de nos communaut\u00e9s - nos m\u00e9decins, nos coll\u00e8gues, nos amis et nos familles.<\/p>\n

J'aimerais \u00e9galement que le monde sache que si le LGMD est diff\u00e9rent d'une personne \u00e0 l'autre, il est \u00e9galement diff\u00e9rent d'une personne \u00e0 l'autre pour<\/em> tout le monde tous les jours<\/em>. Je ne peux pas garantir comment mon corps se sentira demain, et je ne peux pas pr\u00e9voir comment cela \u00e9voluera au fil du temps. Ce n'est pas parce que j'ai fait quelque chose hier que je peux le faire aujourd'hui. Malheureusement, mon corps est plus impr\u00e9visible que la moyenne des gens.<\/p>\n

Si votre LGMD peut \u00eatre <\/strong>\"<\/strong>gu\u00e9ri\" demain, quelle serait la premi\u00e8re chose que vous voudriez faire ?<\/strong>?<\/p>\n

Je n'arrive pas \u00e0 me d\u00e9cider, car il y a tellement de choses que je voudrais faire ! Je pr\u00e9voirais certainement un voyage de ski. J'organiserais une randonn\u00e9e. J'irais courir avec mon chien. Je ferais un voyage de 11 heures pour aller voir ma meilleure amie dans le Tennessee. J'irais \u00e0 Disneyland et je marcherais dans tout le parc. Je r\u00e9serverais un vol pour New York et je marcherais toute la journ\u00e9e dans la ville. Je m'inscrirais \u00e0 un cours d'entra\u00eenement avec mes amis. J'irais faire du patin \u00e0 glace et j'apprendrais \u00e0 faire du roller. Je ferais toutes les choses que je consid\u00e9rais comme acquises \u00e0 un moment donn\u00e9, et bien plus encore.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":8005,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,124,16],"class_list":["post-8006","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-lgmdr2","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Amanda - 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\/2024\/04\/19\/8006\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amanda - 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