{"id":3643,"date":"2020-09-15T17:53:22","date_gmt":"2020-09-15T22:53:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3643"},"modified":"2024-02-09T14:24:30","modified_gmt":"2024-02-09T14:24:30","slug":"kaya","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/09\/15\/kaya\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Kaya"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

Nom<\/strong>: Kaya                           L'\u00e2ge<\/strong>: 18 ans<\/p>\n\n\n\n

Pays<\/strong>: Pays-Bas<\/p>\n\n\n\n

LGMD Sous-type<\/strong>: LGMD 2D\/ R3 li\u00e9 \u00e0 l'alpha-sarcoglycane<\/p>\n\n\n\n

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

Je crois que c'\u00e9tait vers mon troisi\u00e8me anniversaire, mais je ne peux pas dire que je me souvienne de grand-chose. Le diagnostic a \u00e9t\u00e9 pos\u00e9 tr\u00e8s t\u00f4t.<\/p>\n\n\n\n

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

Je suis n\u00e9e pratiquement en m\u00eame temps que ma s\u0153ur et mon premier sympt\u00f4me s'est manifest\u00e9 lorsque j'ai commenc\u00e9 \u00e0 marcher \u00e0 quatre pattes. Ma s\u0153ur, qui est en bonne sant\u00e9, marchait \u00e0 quatre pattes comme le ferait un enfant normal, alors que je marchais bizarrement, une jambe devant l'autre, en me tra\u00eenant essentiellement. Un acupuncteur et grand ami de la famille l'a remarqu\u00e9 et a averti ma m\u00e8re, d'o\u00f9 le diagnostic pr\u00e9coce. Un autre sympt\u00f4me qui s'est d\u00e9velopp\u00e9 un peu plus tard \u00e9tait le fait que je tombais. Cela s'est manifest\u00e9 lorsque j'ai commenc\u00e9 \u00e0 aller \u00e0 l'\u00e9cole et que j'essayais de suivre mes camarades. Apr\u00e8s avoir re\u00e7u une th\u00e9rapie g\u00e9nique dans le cadre d'un essai clinique, ce dernier sympt\u00f4me a consid\u00e9rablement diminu\u00e9 au point que je n'ai pas chut\u00e9 depuis environ deux ans, ce qui, je suppose, est un score que la plupart des personnes en bonne sant\u00e9 ne peuvent pas reproduire.<\/p>\n\n\n\n

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

Non, je suis le seul dans ma famille.<\/p>\n\n\n\n

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

Pour moi, vivre avec le LGMD signifie continuer \u00e0 se battre. Je fais de l'exercice tous les jours. Juste les choses de base, comme deux fois cinq minutes d'exercices crois\u00e9s, deux fois une minute de planche, etc. Certains jours, il est difficile de garder un esprit positif et de trouver la motivation n\u00e9cessaire pour travailler aussi dur que je le fais. Chacun a une fa\u00e7on diff\u00e9rente de lutter contre la LGMD, la mienne est une approche assez litt\u00e9rale et directe et elle m'a bien servi jusqu'\u00e0 pr\u00e9sent. Mais une telle attitude a un prix, car elle n'est pas partag\u00e9e par les gens de mon \u00e2ge, ce qui fait que j'ai du mal \u00e0 trouver le moindre lien avec eux et que je me retrouve dans une situation d'isolement social avant m\u00eame que le Coronavirus ne s'installe.<\/p>\n\n\n\n

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

Je suis toujours l\u00e0 et je suis plus forte que jamais. Comme je l'ai d\u00e9j\u00e0 dit, j'ai re\u00e7u une th\u00e9rapie g\u00e9nique dans le cadre d'un essai clinique. Apr\u00e8s ce traitement, je me suis mis au travail pour remettre mon corps dans l'\u00e9tat o\u00f9 je le souhaitais. J'ai travaill\u00e9 tr\u00e8s dur avant l'essai pour minimiser les dommages, ce qui est assez difficile pour un jeune enfant qui doit toujours \u00eatre responsable et prendre de nombreux suppl\u00e9ments qui ne sont pas toujours connus pour \u00eatre app\u00e9tissants, puis apr\u00e8s avoir re\u00e7u l'essai, j'ai fait du sport et je me suis senti plus fort et dans une meilleure condition g\u00e9n\u00e9rale. Dire que j'ai vaincu la LGMD est pr\u00e9matur\u00e9 et donc insens\u00e9, mais je serais plus qu'heureux de dire que je suis en train de la saluer d'un doigt.<\/p>\n\n\n\n

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


En tant que jeune enfant, le LGMD m'a oblig\u00e9 \u00e0 \u00eatre tr\u00e8s responsable, car au moindre faux mouvement, je pouvais tomber et me casser quelque chose. Il m'a \u00e9galement forc\u00e9 \u00e0 donner tout ce que j'avais, \u00e0 faire de mon mieux et \u00e0 combattre l'impossible. Elle m'a \u00e9galement fait appr\u00e9cier la vie et tous les bons moments que j'ai v\u00e9cus. Elle a influenc\u00e9 mes valeurs et mes priorit\u00e9s. Toutes ces influences se manifestent dans tout ce qui me d\u00e9finit, de la musique que j'\u00e9coute et que je cr\u00e9e \u00e0 mon \u00e9thique de travail \u00e0 l'\u00e9cole, en passant par le genre de personnes que j'aime c\u00f4toyer.<\/p>\n\n\n\n

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

Je veux que le monde sache que des gens travaillent sans rel\u00e2che pour nous aider. J'ai vu les \u00e9normes laboratoires et installations qui sont mis \u00e0 contribution pour trouver le rem\u00e8de d\u00e9finitif et j'ai pu constater de visu qu'ils travaillent sur de bonnes choses. Je voudrais att\u00e9nuer votre d\u00e9sespoir et vous dire que le domaine progresse \u00e0 un rythme incroyable. Et un jour, je vous garantis que vous recevrez un appel t\u00e9l\u00e9phonique vous disant : \"Bonjour, je crois que j'ai quelque chose pour vous\".<\/p>\n\n\n\n

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

Je pense qu'il convient de f\u00e9liciter tous les anciens membres du LGMD et les chercheurs extraordinaires.<\/p>\n\n\n\n

Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire en vue d'une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name: Kaya                           Age:  18 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3654,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[],"class_list":["post-3643","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Kaya - 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\/2020\/09\/15\/kaya\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Kaya - 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