{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"INDIVIDU AVEC LGMD : Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"Spotlight Interview\" (en anglais)<\/p>\n

NOM<\/strong>: Maram\u00a0\u00a0\u00a0 AGE<\/strong>: 26 ans\"LGMD2E<\/a><\/p>\n

PAYS<\/strong>: Palestine<\/p>\n

LGMD Sous-type<\/strong>: LGMD2E<\/p>\n

 <\/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 10 ans. \u00c0 l'\u00e2ge de 26 ans, j'ai re\u00e7u la confirmation g\u00e9n\u00e9tique de mon diagnostic de LGMD2E.<\/p>\n

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

\u00c0 l'\u00e2ge de 3 ans, mes parents ont remarqu\u00e9 que ma d\u00e9marche \u00e9tait instable et que j'avais du mal \u00e0 me lever du sol.<\/p>\n

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

Non, je suis le seul dans ma famille.<\/p>\n

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

Il y a tellement de d\u00e9fis \u00e0 relever. Pour beaucoup de gens, les choses les plus simples sont mes plus grands d\u00e9fis, mais aller aux toilettes et changer de position d'un c\u00f4t\u00e9 \u00e0 l'autre pendant le sommeil me font me sentir si faible.<\/p>\n

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

Dans mon pays, les gens ne savent rien de la LGMD. J'essaie chaque jour de sensibiliser les gens \u00e0 cette maladie par le biais des m\u00e9dias sociaux. J'ai aid\u00e9 de nombreux patients dans mon pays et dans le monde arabe \u00e0 passer le test g\u00e9n\u00e9tique pour confirmer leur diagnostic et \u00e0 obtenir l'\u00e9quipement dont nous avons besoin pour nous rendre la vie un peu plus facile. J'ai \u00e9galement contact\u00e9 mes patients du monde entier et nous sommes devenus des amis proches. Ils sont ma plus grande r\u00e9ussite.<\/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

Je pense que cela m'a rendu plus fort d'une mani\u00e8re ou d'une autre. Je suis devenu plus attentif aux personnes qui m'entourent. J'appr\u00e9cie toutes les petites b\u00e9n\u00e9dictions de ma vie, y compris ma grande famille. Je me suis rapproch\u00e9 de Dieu. Je pense que cela m'a chang\u00e9 d'une bonne mani\u00e8re et j'aime la personne que je suis aujourd'hui.<\/p>\n

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

Je veux qu'ils sachent que nous ne sommes pas si diff\u00e9rents des gens normaux. Ce qui s'est pass\u00e9, c'est qu'une simple erreur g\u00e9n\u00e9tique ou une mutation m'a caus\u00e9 des difficult\u00e9s \u00e0 me d\u00e9placer alors qu'eux le peuvent. La cause n'est pas si compliqu\u00e9e et si nous la comprenons, nous pouvons trouver le traitement.<\/p>\n

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

J'aimerais serrer mes parents si fort dans mes bras et ne jamais les laisser partir. Je me dis toujours que la vie serait dure sans eux.<\/p>\n

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 : https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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