{"id":2098,"date":"2018-07-13T09:14:39","date_gmt":"2018-07-13T14:14:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2098"},"modified":"2018-07-13T09:14:39","modified_gmt":"2018-07-13T14:14:39","slug":"individual-with-lgmd-majed","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2018\/07\/13\/individual-with-lgmd-majed\/","title":{"rendered":"INDIVIDU AVEC LGMD : Majed"},"content":{"rendered":"<p><strong>LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n<p><strong>Nom<\/strong>: Majed\u00a0 \u00a0<strong>L'\u00e2ge<\/strong>:\u00a0 20\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2099 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pays<\/strong>:  Syrie \/ Allemagne<\/p>\n<p><strong>LGMD Sous-type<\/strong>:  LGMD2C<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong>:<\/p>\n<p>J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 8 ans.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUELS ONT \u00c9T\u00c9 LES PREMIERS SYMPT\u00d4MES ?<\/strong>:<\/p>\n<p>Les sympt\u00f4mes ont commenc\u00e9 \u00e0 appara\u00eetre lorsque j'avais 7 ans.  Enfant, je marchais sur les orteils.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD ?<\/strong>:<\/p>\n<p>Oui, mon fr\u00e8re et deux de mes oncles (les fr\u00e8res de ma m\u00e8re) ont \u00e9galement \u00e9t\u00e9 diagnostiqu\u00e9s avec le LGMD2C. (Mon fr\u00e8re vit toujours en Syrie et s'appelle Younis. Il a d\u00e9j\u00e0 fait l'objet d'une interview sur la LGMD).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD ?<\/strong>:<\/p>\n<p>Le plus grand d\u00e9fi pour moi est de marcher et de rester debout pendant de longues p\u00e9riodes. Je peux marcher 500 m\u00e8tres en m'aidant d'une canne.   Je me d\u00e9place \u00e9galement en fauteuil roulant et j'ai quelques difficult\u00e9s dans la salle de bains.  Parfois, j'accomplis seul certaines t\u00e2ches quotidiennes.<\/p>\n<p>Je vis maintenant en Allemagne avec mon oncle et je n'ai pas vu mes parents et mes fr\u00e8res depuis deux ans.  Je pense qu'il est difficile de vivre seul... loin de ma famille, de mes fr\u00e8res et de mon pays.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION ?<\/strong>:<\/p>\n<p>En r\u00e9alit\u00e9, je ne sais pas quelle est ma plus grande r\u00e9ussite.   Mais je suis fi\u00e8re de pouvoir encore marcher et faire un peu d'exercice.<\/p>\n<p>Malgr\u00e9 les conditions de guerre et de d\u00e9placement en Syrie, j'ai r\u00e9ussi \u00e0 passer le baccalaur\u00e9at et il y a dix ans, j'ai appris \u00e0 nager.<\/p>\n<p>Mais le plus grand d\u00e9fi que j'ai relev\u00e9 est le voyage de refuge de la Syrie \u00e0 l'Allemagne \u00e0 travers 9 pays.  En 10 jours, je ne peux pas d\u00e9crire les difficult\u00e9s rencontr\u00e9es sur une route. Dans une for\u00eat en Serbie, j'ai parcouru 5 kilom\u00e8tres et je n'avais pas de fauteuil roulant \u00e0 l'\u00e9poque, si ce n'est que notre bateau a coul\u00e9 devant les \u00eeles grecques et je ne sais pas comment j'ai surv\u00e9cu \u00e0 la noyade.<\/p>\n<p>Aujourd'hui, j'apprends la langue allemande et, une fois que j'aurai termin\u00e9, j'ach\u00e8verai mes \u00e9tudes universitaires.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR DEVENIR LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI ?<\/strong>:<\/p>\n<p>Le LGMD m'a appris \u00e0 \u00eatre un \u00eatre humain patient et gentil.  Une personne peut faire ce qu'elle veut, quelles que soient les circonstances.  C'est difficile, mais cela m'a aussi appris \u00e0 faire preuve de volont\u00e9 et de d\u00e9termination.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA LGMD ?<\/strong>:<\/p>\n<p>Je veux que le monde entier en sache plus sur cette maladie et sur les diff\u00e9rents types de LGMD. De plus, je veux que les gens sachent qu'il est essentiel de poursuivre la recherche sur la LGMD pour trouver un rem\u00e8de et un traitement \u00e0 ces maladies. J'esp\u00e8re que les scientifiques trouveront un rem\u00e8de \u00e0 cette maladie. Je souhaite \u00e9galement que les gens prennent des mesures pour la pr\u00e9venir.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS SOUHAITERIEZ FAIRE ?<\/strong>:<\/p>\n<p>La premi\u00e8re chose que je ferai sera d'aller \u00e0 la piscine et de sauter d'un endroit \u00e9lev\u00e9.  Et puis courir vite et jouer au football avec mon fr\u00e8re Younis.<\/p>\n<p>&nbsp;<\/p>\n<p>* Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante <a href=\"https:\/\/www.lgmd-info.org\/fr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p>* Merci de LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la LGMD !<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name: Majed\u00a0 \u00a0Age:\u00a0 20\u00a0\u00a0 Country: \u00a0Syria \/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2099,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[98],"class_list":["post-2098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria-germany"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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