{"id":5588,"date":"2022-01-07T02:44:43","date_gmt":"2022-01-07T02:44:43","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5588"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-sophia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2022\/01\/07\/individual-with-lgmd-sophia\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Sophia"},"content":{"rendered":"

\"<\/p>\n

LGMD \"Spotlight Interview\" (en anglais) <\/strong><\/h2>\n

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

L'\u00e2ge<\/strong>: \u00a08<\/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 \u00e0 l'\u00e2ge de 6 ans \u00e0 la suite d'un test g\u00e9n\u00e9tique sanguin.<\/p>\n

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

J'ai eu une pneumonie \u00e0 l'\u00e2ge de 4 ans et demi et ma m\u00e8re m'a emmen\u00e9 faire des analyses de sang parce que j'\u00e9tais malade depuis longtemps. Mon taux d'enzymes h\u00e9patiques \u00e9tait tr\u00e8s \u00e9lev\u00e9 et les m\u00e9decins ont commenc\u00e9 \u00e0 en chercher la cause. J'ai \u00e9galement commenc\u00e9 \u00e0 marcher sur la pointe des pieds. J'ai fait des allers-retours dans de nombreux h\u00f4pitaux et j'ai \u00e9t\u00e9 mal diagnostiqu\u00e9e pendant un an et demi. C'\u00e9tait effrayant, mais j'\u00e9tais tr\u00e8s courageuse.<\/p>\n

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

Pas que nous sachions.<\/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 sont de devoir marcher loin, mes jambes se fatiguent beaucoup et de voir les enfants faire des choses en jouant qui, je le sais, fatigueront mes jambes et mes bras. Avant, j'\u00e9tais aussi capable de faire des barres de singe. Cela me rend triste. Ma famille trouve toujours des moyens de m'aider \u00e0 faire des choses, mais c'est toujours difficile de voir d'autres enfants de mon \u00e2ge courir et jouer sans se fatiguer rapidement comme moi.<\/p>\n

Quelles sont vos plus grandes r\u00e9alisations ?<\/strong><\/p>\n

J'ai parl\u00e9 \u00e0 mes 3rd<\/sup> J'ai parl\u00e9 de mon LGMD2A \u00e0 la classe de ma nouvelle \u00e9cole, m\u00eame si j'avais tr\u00e8s peur. J'aide \u00e0 sensibiliser les gens pour que d'autres enfants n'aient pas \u00e0 traverser autant d'\u00e9preuves pour \u00eatre diagnostiqu\u00e9s et pour nous aider \u00e0 trouver un rem\u00e8de. Je peux faire du cirque et des flexions arri\u00e8re m\u00eame si j'ai une dystrophie musculaire. Cela ne m'emp\u00eache pas d'essayer de nouvelles choses, m\u00eame si je sais que ce sera difficile. J'ai aussi appris \u00e0 faire du v\u00e9lo \u00e9lectrique pour pouvoir jouer avec mes amis.<\/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 rendu tr\u00e8s courageux. Je fais face \u00e0 mes peurs de tomber devant les gens et de me rendre \u00e0 l'h\u00f4pital, et cela me rend forte. Je ne vois pas les handicaps ou les regards des gens, je les vois. J'apprends \u00e9galement \u00e0 m'accepter telle que je suis.<\/p>\n

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

Vous pouvez avoir une vie tr\u00e8s heureuse et les parents doivent savoir que les enfants comme moi sont heureux m\u00eame s'ils sont atteints de dystrophie musculaire. M\u00eame si j'en suis atteint, je trouve des moyens de me d\u00e9placer et j'utilise mon fauteuil roulant quand j'en ai besoin. Ce n'est pas toujours facile et cela peut \u00eatre effrayant lorsque votre corps ne fonctionne pas comme vous le souhaitez. Je veux que le monde sache que des enfants comme moi attendent un traitement.<\/p>\n

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

Je voudrais courir tr\u00e8s vite et tr\u00e8s loin, faire du v\u00e9lo, des barres de singe et beaucoup de gymnastique.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5587,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-5588","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sophia - 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\/2022\/01\/07\/individual-with-lgmd-sophia\/\" 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