{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

LGMD \"Spotlight Interview\" (en anglais) <\/strong><\/p>\n

N<\/strong>ame<\/strong>: Soralla<\/p>\n

L'\u00e2ge<\/strong>: 28<\/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 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 23 ans.<\/p>\n

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

Au d\u00e9but, mes sympt\u00f4mes \u00e9taient une l\u00e9g\u00e8re faiblesse du bas du corps, j'avais du mal \u00e0 monter les escaliers aussi vite que j'en avais l'habitude, ou \u00e0 me lever du sol, surtout lorsque nous nous asseyions dans la cour d'\u00e9ducation physique. N'oubliez pas que ces sympt\u00f4mes ont commenc\u00e9 dans les ann\u00e9es 11th<\/sup> de l'\u00e9cole secondaire. Pourtant, je n'ai \u00e9t\u00e9 diagnostiqu\u00e9e qu'\u00e0 l'\u00e2ge de 23 ans.<\/p>\n

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

Aucun autre membre de la famille n'a \u00e9t\u00e9 diagnostiqu\u00e9 comme \u00e9tant atteint de LGMD. J'ai deux fr\u00e8res et s\u0153urs plus jeunes qui n'ont pas \u00e9t\u00e9 test\u00e9s, mais ils ont d\u00e9pass\u00e9 l'\u00e2ge de 23 ans et se portent bien pour le moment.<\/p>\n

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

Personnellement, pour moi, le plus grand d\u00e9fi est d'accepter la personne que je suis en train de devenir. Je dis cela parce que parfois, je me rends compte que beaucoup de changements que je subis ne sont pas de mon fait et ne d\u00e9pendent pas de moi. L'un d'entre eux est la perte progressive de mon ind\u00e9pendance. Apr\u00e8s avoir v\u00e9cu une vie tr\u00e8s ind\u00e9pendante et avoir eu l'impression que le monde \u00e9tait \u00e0 ma port\u00e9e, le sentiment de perdre cette vision de l'avenir a \u00e9t\u00e9 et sera probablement mon plus grand d\u00e9fi.<\/p>\n

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

Ma plus grande r\u00e9ussite est d'avoir trouv\u00e9 ma voix. Je ne suis pas aussi militante que je le voudrais, mais j'ai parl\u00e9 de moi et de mon histoire \u00e0 plusieurs reprises. J'ai cr\u00e9\u00e9 une cha\u00eene YouTube et j'ai racont\u00e9 mon histoire de mon point de vue. Je suis \u00e9galement tr\u00e8s fi\u00e8re d'\u00eatre retourn\u00e9e \u00e0 l'\u00e9cole pour terminer mes \u00e9tudes qui avaient \u00e9t\u00e9 interrompues en raison du diagnostic de mon handicap.<\/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

Il m'a ouvert le c\u0153ur, l'esprit et l'\u00e2me comme rien d'autre n'a jamais pu le faire. Je veux croire que j'ai toujours \u00e9t\u00e9 tr\u00e8s empathique et que j'ai un grand c\u0153ur, mais malheureusement un c\u0153ur tr\u00e8s faible. J'ai \u00e9t\u00e9 tr\u00e8s malmen\u00e9e dans mon enfance et j'ai subi des traumatismes. Maintenant que je traverse cette \u00e9preuve, j'ai l'impression que tout ce pass\u00e9 a pr\u00e9par\u00e9 mon c\u0153ur \u00e0 cette bataille. Je le dis haut et fort, car je suis plus forte \u00e9motionnellement que je ne l'aurais jamais imagin\u00e9. Si je devais parler de moi aujourd'hui \u00e0 mon cadet, je ne me croirais pas.<\/p>\n

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

Je veux que le monde sache que nous sommes importants. La LGMD est un handicap physique, mais elle a des r\u00e9percussions sur la sant\u00e9 \u00e9motionnelle, mentale et m\u00eame spirituelle. Aidez donc les autres \u00e0 raconter leur v\u00e9rit\u00e9, leur histoire, et aidez-nous \u00e0 diffuser dans le monde entier notre message d'espoir, \u00e0 savoir qu'un jour nous pourrons trouver un rem\u00e8de.<\/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 pouvais \u00eatre gu\u00e9rie demain, il y a tant de choses, d'aventures, de sorties et d'\u00e9v\u00e9nements auxquels je participerais. Mais il y a une chose que je continuerais \u00e0 faire, c'est militer et travailler dur pour que tous ceux qui peuvent \u00eatre gu\u00e9ris aient la chance qu'ils m\u00e9ritent. Parce qu'apr\u00e8s avoir v\u00e9cu avec cette maladie, je ne peux pas me lever et vivre ma vie sans jamais regarder en arri\u00e8re comme si rien ne s'\u00e9tait pass\u00e9.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - 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\" 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