{"id":3769,"date":"2020-12-03T09:38:38","date_gmt":"2020-12-03T15:38:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3769"},"modified":"2024-02-09T14:24:25","modified_gmt":"2024-02-09T14:24:25","slug":"individual-with-lgmd-saira","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/","title":{"rendered":"INDIVIDU AVEC LGMD - Saira"},"content":{"rendered":"

\"\"<\/a><\/strong><\/p>\n

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

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

Pays<\/strong>: Indien vivant aux EAU<\/p>\n

LGMD Sous-type<\/strong> (si connu) : LGMD 2B\/R2 li\u00e9e \u00e0 la dysferline<\/p>\n

\u00a0<\/strong><\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 16 ans. J'ai re\u00e7u la confirmation g\u00e9n\u00e9tique en f\u00e9vrier 2020.<\/p>\n

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

Tomber d'un coup et se relever d'une position assise sur le sol ont \u00e9t\u00e9 les premiers sympt\u00f4mes.<\/p>\n

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

Non, aucun membre de ma famille n'est atteint de LGMD. Je suis le seul \u00e0 avoir re\u00e7u un diagnostic de LGMD.<\/p>\n

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

Obstacles environnementaux et accessibilit\u00e9 aux fauteuils roulants. Possibilit\u00e9s d'emploi sans stigmatisation des capacit\u00e9s que j'ai. Le manque de neurologues int\u00e9ress\u00e9s par la LGMD et la rapidit\u00e9 du diagnostic. L'\u00e9volution de la LGMD et la mani\u00e8re de faire face aux d\u00e9fis permanents associ\u00e9s \u00e0 la maladie. Peu ou pas de conseils sur les types d'\u00e9quipements qui pourraient \u00eatre utiles pour les activit\u00e9s quotidiennes.<\/p>\n

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

J'ai commenc\u00e9 un nouvel emploi dans une entreprise des \u00c9mirats arabes unis, qui m'a permis de travailler \u00e0 domicile dans le cadre d'un am\u00e9nagement accessible pour m'inclure. Aujourd'hui, je travaille tous les jours pour Inclusive afin d'avoir un impact global et de rendre ce monde plus accessible en ligne et hors ligne.<\/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 donn\u00e9 une nouvelle perspective sur la vie et m'a appris \u00e0 appr\u00e9cier mon temps et mes capacit\u00e9s actuelles.<\/p>\n

Je ne suis peut-\u00eatre pas capable de tout faire physiquement comme mon voisin, mais cela ne veut pas dire que je n'ai rien \u00e0 apporter pour avoir un impact sur le monde que nous partageons tous de mani\u00e8re \u00e9gale.<\/p>\n

Le LGMD m'a appris \u00e0 \u00eatre plus reconnaissant envers ma famille qu'auparavant, gr\u00e2ce \u00e0 leur soutien constant.<\/p>\n

Cela m'a permis de vivre et d'aimer encore plus chaque instant.<\/p>\n

Comme il s'agit d'une maladie d\u00e9g\u00e9n\u00e9rative, elle progresse, les choses que je peux faire aujourd'hui ne seront peut-\u00eatre plus celles que je pourrai faire dans l'ann\u00e9e \u00e0 venir. J'essaie donc de profiter de chaque mouvement physique que je peux faire aujourd'hui, maintenant. Qu'il s'agisse de me coiffer ou de me pr\u00e9parer une tasse de th\u00e9, j'y attache de l'importance.<\/p>\n

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

Je veux que le monde sache qu'il s'agit d'une maladie rare. Elle peut toucher n'importe qui. Ce pourrait \u00eatre vous qui lisez ces lignes, ou quelqu'un que vous ne connaissez peut-\u00eatre pas et qui pourrait vivre avec cette maladie. Mais il y a des gens qui vivent avec cette maladie qui d\u00e9truit les muscles et qui attend un rem\u00e8de. Je peux vous donner l'exemple de la pand\u00e9mie et de la course que m\u00e8nent les scientifiques du monde entier pour trouver un vaccin. En revanche, dans le cas de la LGMD, la recherche se poursuit depuis des d\u00e9cennies sans r\u00e9sultat, notamment en raison du manque de fonds ou du manque de soutien gouvernemental. De l'apparition des sympt\u00f4mes au diagnostic, jusqu'au jour o\u00f9 j'ai accept\u00e9 la LGMD et commenc\u00e9 \u00e0 vivre avec, j'ai v\u00e9cu un parcours solitaire. Le soutien de mon mari, de ma famille et de mes amis me donne du courage chaque jour. Le manque de sp\u00e9cialistes et de connaissances sur la maladie est un probl\u00e8me auquel je suis confront\u00e9e \u00e0 chaque visite chez le m\u00e9decin. Nous avons besoin d'empathie dans un environnement sans barri\u00e8res. Hier, je marchais et aujourd'hui, j'ai besoin d'un fauteuil roulant. La justification de mon \u00e9tat sera plus facile si les gens connaissent la LGMD.<\/p>\n

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

La question \u00e0 laquelle je r\u00e9ponds est hypoth\u00e9tique. J'aurais aim\u00e9 y r\u00e9pondre comme s'il s'agissait d'une question pratique et j'attends ce jour avec positivit\u00e9 et espoir.<\/p>\n

Ce jour est peut-\u00eatre loin, ou peut-\u00eatre bient\u00f4t. J'aimerais me mettre \u00e0 genoux et prier comme je le souhaite, conform\u00e9ment \u00e0 mes croyances religieuses. J'aimerais danser et patiner, ce que je ne peux plus faire depuis que je suis atteint de LGMD. J'aimerais conduire une voiture. J'aspire \u00e0 redevenir ind\u00e9pendante.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3769","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD - Saira - 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\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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