{"id":3276,"date":"2020-06-16T14:26:06","date_gmt":"2020-06-16T19:26:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3276"},"modified":"2024-02-09T14:24:37","modified_gmt":"2024-02-09T14:24:37","slug":"ibrahim","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/","title":{"rendered":"INDIVIDU AVEC LGMD : \u0130brahim"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

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

Nom<\/strong>: \u0130brahim                                 L'\u00e2ge<\/strong>: 55 ans<\/p>\n\n\n\n

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

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

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 25 ans.<\/p>\n\n\n\n

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

Au d\u00e9but, je me sentais fatigu\u00e9e lors des mouvements r\u00e9p\u00e9titifs. La faiblesse est apparue au niveau des chevilles. Elle \u00e9tait plus marqu\u00e9e au niveau du pied gauche.<\/strong><\/p>\n\n\n\n

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

Non, personne dans ma famille n'a re\u00e7u le m\u00eame diagnostic.<\/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

Au d\u00e9but, j'ai ressenti une l\u00e9g\u00e8re fatigue. Comme j'\u00e9tais enseignante, les longues p\u00e9riodes de station debout semblaient avoir un effet n\u00e9gatif sur mes performances professionnelles. J'ai commenc\u00e9 \u00e0 marcher avec une simple canne, mais j'avais du mal \u00e0 me rendre au travail. J'ai commenc\u00e9 \u00e0 utiliser des chaises.<\/p>\n\n\n\n

Comme il s'agit d'une maladie musculaire \u00e0 \u00e9volution lente, j'ai eu du mal \u00e0 m'expliquer \u00e0 mon entourage.<\/strong><\/p>\n\n\n\n

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

Apr\u00e8s avoir quitt\u00e9 l'enseignement, je me suis dit que je devais toucher la vie des autres. J'ai d'abord travaill\u00e9 pour T\u00fcrkiye Kas Hastal\u0131klar\u0131 Derne\u011fi (Turkey Muscle Disorders Organization - comme MDA). Plus tard, j'ai \u00e9galement travaill\u00e9 pour HASGAP (R\u00e9seau de patients volontaires). Je travaille toujours b\u00e9n\u00e9volement pour la branche des maladies musculaires d'Izmir-Turquie. Je me passionne pour la po\u00e9sie et l'\u00e9criture depuis mes ann\u00e9es d'\u00e9tudes secondaires. J'ai \u00e9crit deux livres de po\u00e9sie (Moon Blue Nights et a Shore-Free Sea).<\/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

Vivre avec le LGMD m'a permis de porter la mort dans ma poche, ce qui m'a permis de go\u00fbter davantage \u00e0 la vie. Elle l'a rendue plus productive. Elle a permis \u00e0 la vie de toucher davantage.<\/p>\n\n\n\n

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

La seule fa\u00e7on pour le monde de conna\u00eetre notre monde est de faire la diff\u00e9rence. Nous ne pouvons pas parler de changer notre qualit\u00e9 de vie si nous ne r\u00eavons pas, si nous ne produisons pas et si nous ne partageons pas ce que nous produisons. La plupart d'entre nous luttent contre leurs maladies. S'il n'y a pas de r\u00eave et d'effort dans cet effort, nous ne pouvons rien changer. Les mentalit\u00e9s qui ne r\u00eavent pas et ne produisent pas ne peuvent pas comprendre cela.<\/p>\n\n\n\n

Je veux qu'ils sachent que notre c\u0153ur et notre cerveau fonctionnent.<\/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 modifierais mon imagination. Je courrais parmi les galaxies et je jouerais dans les parcs pour enfants des galaxies. 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:  \u0130brahim                                 Age:  55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3277,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3276","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: \u0130brahim - 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\/06\/16\/ibrahim\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: \u0130brahim - 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