{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Cyanne"},"content":{"rendered":"

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

\"\"<\/p>\n

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

L'\u00e2ge<\/strong>:\u00a0 29<\/p>\n

Pays<\/strong>: Australie-M\u00e9ridionale<\/p>\n

LGMD Sous-type<\/strong>: LGMD Type 2i \/ R9 li\u00e9 au dystroglycane<\/p>\n

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

On m'a diagnostiqu\u00e9 une dystrophie musculaire \u00e0 l'\u00e2ge de 2 ans. Ce n'est qu'\u00e0 l'\u00e2ge de 21 ans que j'ai d\u00e9couvert que j'\u00e9tais atteinte d'une LGMD de type 2i. Ou R9 maintenant que le nom a \u00e9t\u00e9 chang\u00e9.<\/p>\n

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

Le tout premier sympt\u00f4me que ma m\u00e8re a remarqu\u00e9, c'est que je ne pouvais pas tenir ma t\u00eate en l'air lorsque j'\u00e9tais dans un trotteur.
\nDe plus, je ne marchais pas \u00e0 quatre pattes alors que d'autres personnes de mon \u00e2ge le faisaient. J'ai eu beaucoup de mal, physiquement.<\/p>\n

Le sympt\u00f4me que j'ai remarqu\u00e9 pour la premi\u00e8re fois, c'est que je n'arrivais pas \u00e0 suivre les autres enfants. Je n'\u00e9tais tout simplement pas aussi rapide qu'eux, mais cela ne m'a jamais d\u00e9rang\u00e9 ! Je savais que j'\u00e9tais diff\u00e9rent et cela ne me d\u00e9rangeait pas.<\/p>\n

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

Ma s\u0153ur jumelle est \u00e9galement atteinte du LGMD2i, mais il n'y a pas d'autres cas connus dans la lign\u00e9e familiale.<\/p>\n

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

Je lutte contre la perte de mon ind\u00e9pendance. Elle devient de plus en plus inaccessible au fur et \u00e0 mesure que mon \u00e9tat se d\u00e9grade. Comme pour la vie. Pourrai-je un jour acc\u00e9der au travail de mes r\u00eaves ? Vais-je rencontrer l'homme de mes r\u00eaves ? Combien de temps encore pourrai-je continuer \u00e0 faire ce que j'aime ?<\/p>\n

L'une des autres difficult\u00e9s que je rencontre dans ma vie avec le LGMD est que, trop souvent, les gens ne voient que mon fauteuil roulant. Ils ne voient pas la personne qui y est assise. Je m'efforce de changer cette situation en sensibilisant ma communaut\u00e9 et d'autres personnes. En montrant et en expliquant que les personnes handicap\u00e9es sont aussi des \u00eatres humains. Nous avons les m\u00eames d\u00e9sirs et les m\u00eames besoins que tout le monde.<\/p>\n

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

J'ai l'impression de vouloir copier et coller mon CV ici. Ha ha !<\/p>\n

J'ai beaucoup \u00e9tudi\u00e9 au fil des ans, car j'ai chang\u00e9 de carri\u00e8re. J'ai pass\u00e9 au moins 10 ans \u00e0 \u00e9tudier l'architecture, l'am\u00e9nagement int\u00e9rieur et la d\u00e9coration. Cependant, j'ai depuis chang\u00e9 d'orientation professionnelle, je me consacre maintenant au conseil et j'\u00e9tudie l'art-th\u00e9rapie. J'ai probablement suivi un total de 20 cours au fil des ans. Certains de ces cours ne sont que des cours d'un jour, pas de panique ! J'ai \u00e9galement fait beaucoup de b\u00e9n\u00e9volat. J'ai \u00e9galement d\u00e9fendu les int\u00e9r\u00eats de ceux qui ont du mal \u00e0 s'exprimer. J'ai particip\u00e9 \u00e0 l'am\u00e9nagement de ma plage pour qu'elle soit accessible aux fauteuils roulants. J'ai collect\u00e9 des fonds pour acheter des fauteuils roulants et des tapis de plage. J'ai \u00e9galement travaill\u00e9 dur pour obtenir une installation \"Changing Places\". Et bien d'autres choses encore.<\/p>\n

Au fil des ans, j'ai pris la parole lors d'\u00e9v\u00e9nements et de forums, j'ai travaill\u00e9 en \u00e9troite collaboration avec le conseil municipal et je me suis rendu au Parlement. J'ai \u00e9t\u00e9 invit\u00e9e \u00e0 des \u00e9v\u00e9nements et \u00e0 des forums et j'ai remport\u00e9 des prix. J'ai m\u00eame ma propre entreprise. Ce n'est que la pointe du ice burg !<\/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

Oh, cela m'a certainement influenc\u00e9 ! Ce que je fais aujourd'hui, je le dois \u00e0 mon LGMD. Je ne pense pas que je serais la m\u00eame personne aujourd'hui sans cela.<\/p>\n

Je suis beaucoup plus patiente, ouverte d'esprit et terre-\u00e0-terre, et je comprends que tout ne va pas sans difficult\u00e9s. J'appr\u00e9cie les choses que je peux encore faire, comme dessiner ou peindre, sachant qu'un jour je pourrais perdre cette capacit\u00e9 aussi. Mais j'aurai toujours un esprit fort. Je perdrai peut-\u00eatre la capacit\u00e9 de faire des choses physiquement, mais j'ai un esprit fort et sain et je l'utiliserai jusqu'\u00e0 ma mort !<\/p>\n

Je crois que j'ai toujours eu le d\u00e9sir d'aider les gens. Je sais qu'un peu d'aide peut faire beaucoup. J'envisage de devenir conseill\u00e8re et peut-\u00eatre de suivre une th\u00e9rapie par l'art pour aider ceux qui en ont besoin.<\/p>\n

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

Eh bien, c'est facile. LA DYSTROPHIE MUSCULAIRE DES CEINTURES, \u00c7A CRAINT ! La dystrophie musculaire des ceintures est une maladie qui entra\u00eene une faiblesse musculaire. Vos muscles d\u00e9p\u00e9rissent, vous ne pouvez ni gagner ni augmenter votre force. Vos muscles continuent \u00e0 se d\u00e9t\u00e9riorer avec le temps, ce qui peut rendre la vie extr\u00eamement difficile. Aucune s\u00e9ance d'exercice ou d'halt\u00e9rophilie ne m'aidera \u00e0 me muscler comme un Jo moyen. C'est le genre de maladie qui s'aggravera toujours avec le temps. Il n'y a pas de rem\u00e8de, ni de m\u00e9dicaments pour m'aider.<\/p>\n

Cela rend la vie difficile, surtout lorsque les lieux ne sont pas accessibles aux fauteuils roulants. C'est un obstacle apr\u00e8s l'autre !<\/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 serrerais ma m\u00e8re et mes fr\u00e8res dans mes bras. J'ai perdu la capacit\u00e9 de faire des c\u00e2lins il y a des ann\u00e9es ! Je sauterais aussi \u00e0 cloche-pied ! Je pense que je serais perdue. Je ne saurais m\u00eame pas par o\u00f9 commencer, ni quoi faire !<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5507,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[],"class_list":["post-5506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cyanne - 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=\"http:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cyanne - 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