{"id":5212,"date":"2021-03-03T18:35:03","date_gmt":"2021-03-03T18:35:03","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5212"},"modified":"2024-02-09T14:24:22","modified_gmt":"2024-02-09T14:24:22","slug":"individual-with-lgmd-kae","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/03\/03\/individual-with-lgmd-kae\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Kae"},"content":{"rendered":"
\"Lgmd2b<\/span><\/div>

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

Pays<\/strong>: Canada<\/p>\n

LGMD Sous-type<\/strong>: LGMD 2B\/R2 li\u00e9e \u00e0 la dysferline \/ Myopathie de Miyoshi<\/p>\n

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

On m'a diagnostiqu\u00e9 une LGMD \u00e0 l'\u00e2ge de 17 ans.<\/p>\n

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

Ne plus pouvoir marcher sur la pointe des pieds, sauter en hauteur, monter deux marches \u00e0 la fois ou courir aussi vite qu'au d\u00e9but de l'ann\u00e9e.<\/p>\n

vers l'\u00e2ge de 14 ans.<\/p>\n

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

Oui, mon fr\u00e8re a\u00een\u00e9 est \u00e9galement atteint de LGMD.<\/p>\n

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

Les plus grands d\u00e9fis sont la s\u00e9curit\u00e9 et l'ind\u00e9pendance... suivis par l'aspect social\/romantique\/emploi.<\/p>\n

Quelle est votre plus grande r\u00e9alisation ?<\/strong><\/p>\n

J'ai d\u00e9m\u00e9nag\u00e9 \u00e0 l'\u00e2ge de 18 ans, j'ai obtenu mon baccalaur\u00e9at, mon permis de conduire, j'ai eu ma propre voiture et j'ai \u00e9tabli ma propre carri\u00e8re en tant qu'ind\u00e9pendante ou avocate.<\/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 vraiment permis de ne pas prendre les petites choses de la vie pour acquises... Je pratique quotidiennement la gratitude et la pleine conscience. J'ai appris que j'\u00e9tais plus capable et plus forte que je ne l'avais jamais imagin\u00e9. Je g\u00e8re et fais face \u00e0 l'adversit\u00e9 assez bien maintenant et je suis une personne beaucoup plus spirituelle gr\u00e2ce \u00e0 ce voyage. J'ai \u00e9galement appris \u00e0 donner la priorit\u00e9 \u00e0 ma sant\u00e9 mentale et \u00e0 me concentrer sur ce que je peux contr\u00f4ler.<\/p>\n

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

Il peut s'agir d'une maladie ou d'un handicap isolant et invisible... ce n'est pas parce que nous n'en parlons pas que nous ne le faisons pas.<\/p>\n

Nous voulons que nos enfants ne se d\u00e9battent pas et qu'ils n'aient pas d'impact mental ou \u00e9motionnel sur nous. Nous voulons \u00eatre vus pour plus<\/p>\n

que notre handicap, mais nous aimerions aussi que vous reconnaissiez et compreniez nos difficult\u00e9s.<\/p>\n

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

Je danserais !<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5213,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-5212","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Kae - 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\/2021\/03\/03\/individual-with-lgmd-kae\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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