{"id":999,"date":"2015-08-27T15:25:15","date_gmt":"2015-08-27T20:25:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=999"},"modified":"2015-08-27T15:25:15","modified_gmt":"2015-08-27T20:25:15","slug":"sabrina","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Sabrina"},"content":{"rendered":"

08\/27\/2015<\/p>\n

Nom<\/strong>: Sa<\/strong>brina \u00a0\u00a0\u00a0\u00a0\u00a0AGE :<\/strong> 32\"LGMD2D<\/a><\/p>\n

PAYS :\u00a0 <\/strong>Bangladesh<\/p>\n

LGMD Sous-type :<\/strong> \u00a0LGMD 2D<\/p>\n

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

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

\u00c0 l'\u00e2ge de 9 ans, j'ai \u00e9t\u00e9 diagnostiqu\u00e9e.<\/p>\n

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

Je tombais fr\u00e9quemment et j'avais du mal \u00e0 monter les escaliers et \u00e0 courir.<\/p>\n

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

Oui, c'est vrai ! Ma s\u0153ur cadette est \u00e9galement atteinte de LGMD.<\/p>\n

 <\/p>\n

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

En vivant avec la LGMD, j'ai d'abord d\u00fb faire face \u00e0 des obstacles sociaux et infrastructurels. Par exemple, \u00e0 cause de la<\/p>\n

L'inaccessibilit\u00e9 de notre pays ne m'a pas permis de terminer mes \u00e9tudes. Je n'ai pas pu me rendre \u00e0 des mariages, \u00e0 des r\u00e9unions de famille, \u00e0 des anniversaires ou \u00e0 d'autres \u00e9v\u00e9nements de ce genre. J'ai donc r\u00e9duit mes relations sociales d\u00e8s l'enfance. J'ai surtout grandi entre les quatre murs de ma maison.<\/p>\n

En outre, les difficult\u00e9s physiques que je rencontre sont li\u00e9es au fait que je ne peux rien faire par moi-m\u00eame. Je ne peux bouger aucune partie de mon corps, \u00e0 l'exception de mes doigts, de mes orteils et de ma t\u00eate. J'ai besoin d'aide pour pratiquement tout et je dois donc compter enti\u00e8rement sur quelqu'un d'autre. Les jours ont pass\u00e9 et mon \u00e9tat physique est devenu plus critique. Le plus grand d\u00e9fi physique que je rencontre actuellement est mon probl\u00e8me respiratoire, malgr\u00e9 lequel je veux poursuivre ma vie avec toute la passion qu'elle m\u00e9rite.<\/p>\n

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

Ma vie a chang\u00e9 du jour au lendemain lorsque j'ai appris que ma jeune s\u0153ur ador\u00e9e \u00e9tait atteinte de la m\u00eame maladie. Je pouvais imaginer pour elle le m\u00eame avenir angoissant que celui que je vivais - cela m'a r\u00e9volt\u00e9e. Le reste du monde ne pr\u00e9sente pas la m\u00eame image - pourquoi cette situation de discrimination dans notre pays ? Pourquoi doivent-ils entendre \"non\" au tout d\u00e9but de leur vie pour tout ? M\u00eame apr\u00e8s avoir fait partie de cette soci\u00e9t\u00e9, ils ont commenc\u00e9 \u00e0 s'en \u00e9loigner. Avec toutes ces questions en t\u00eate, je me suis sentie frustr\u00e9e. Puis, un petit changement de mentalit\u00e9 m'a permis d'\u00e9crire une lettre au Premier ministre de mon pays en f\u00e9vrier 2008.<\/p>\n

En avril 2009, j'ai eu l'occasion d'entrer en contact avec le monde gr\u00e2ce \u00e0 Internet et \u00e0 Facebook, qui est un moyen facile de rassembler les gens. Avec l'inspiration d'un ami Facebook, j'ai essay\u00e9 d'envoyer une lettre \u00e0 autant de personnes que possible et de les sensibiliser aux droits des personnes handicap\u00e9es par le biais du plaidoyer. C'est ainsi qu'a d\u00e9but\u00e9 le 17 juillet 2009 l'aventure de la Bangladesh Society for the Change and Advocacy Nexus (B-SCAN), une organisation b\u00e9n\u00e9vole visant \u00e0 offrir aux personnes handicap\u00e9es une vie meilleure en cr\u00e9ant un r\u00e9seau par le biais d'actions de plaidoyer en faveur d'un changement de syst\u00e8me au Bangladesh. J'ai \u00e9galement commenc\u00e9 \u00e0 \u00e9crire sur des blogs pour sensibiliser le public. J'ai \u00e9t\u00e9 nomin\u00e9e au concours international de blogs de la cha\u00eene d'information allemande Deutsche Welle en 2011 et j'ai obtenu la deuxi\u00e8me place mondiale.<\/p>\n

B-SCAN dans son ensemble a re\u00e7u une r\u00e9ponse formidable, beaucoup ont manifest\u00e9 leur inqui\u00e9tude. Notre vie \u00e0 l'int\u00e9rieur du mur a chang\u00e9. Nous avons commenc\u00e9 \u00e0 r\u00eaver de campagnes de sensibilisation et de d\u00e9fense des droits des personnes handicap\u00e9es dans tout le pays, afin de sensibiliser les gens et de les aider \u00e0 obtenir leurs droits.<\/p>\n

Chaque matin, lorsque je me l\u00e8ve, la premi\u00e8re chose que je vois est le ciel bleu ouvert. J'ai l'impression que cette terre est vraiment belle, que la vie est belle. J'aimerais toucher le ciel. Je voudrais me tenir debout sous le ciel ouvert et respirer profond\u00e9ment. Je n'ai jamais pens\u00e9 que j'en serais un jour capable, j'ai seulement r\u00eav\u00e9 et souhait\u00e9. Ce souhait, cette volont\u00e9 me donnait de la force, m'incitait \u00e0 vivre une bonne vie. Et c'est cette volont\u00e9 qui m'a fait r\u00eaver de B-SCAN qui est, je pense, la plus grande r\u00e9ussite de ma vie. Le B-SCAN est la motivation qui m'a fait sortir \u00e0 ciel ouvert.<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ? <\/strong>: <\/strong><\/p>\n

Lorsqu'on m'a diagnostiqu\u00e9 une LGMD, je n'ai jamais consid\u00e9r\u00e9 cela comme un probl\u00e8me ou quoi que ce soit de ce genre. Ma vie a chang\u00e9 lorsque la m\u00eame chose est arriv\u00e9e \u00e0 ma s\u0153ur. Lorsque je l'ai vue vivre la m\u00eame chose, j'ai eu l'impression d'avoir une toute nouvelle image, une toute nouvelle perspective. Cela m'a fait penser \u00e0 toutes les \"Sabrinas\" de ce pays, \u00e0 leur survie, \u00e0 leur douleur et \u00e0 leur mis\u00e8re. Toutes ces pens\u00e9es ont donn\u00e9 naissance \u00e0 une nouvelle Sabrina en moi. En tant que personne, je suis devenue plus forte.<\/p>\n

Je souhaite changer les perspectives des gens et faire de ce pays un endroit appropri\u00e9 pour les personnes handicap\u00e9es afin qu'elles puissent faire valoir leurs droits.<\/p>\n

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

Vivre avec une LGMD n'est pas la fin de la vie. Chacun devrait s'informer de plus en plus sur la maladie. Cela peut se faire en \u00e9tudiant tous les sites web qui s'y rapportent. Chacun doit continuer \u00e0 vivre librement et joyeusement, comme avant, voire plus. Essayez de profiter de chaque instant de la vie. Peu importe s'il n'y a toujours pas de traitement. La frustration ne fait que rendre votre vie un fardeau pour vous-m\u00eame. La vie est vraiment belle. S'il y a un probl\u00e8me, il doit y avoir une solution. Il suffit de la chercher. Restez toujours positif.<\/p>\n

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

Mon bonheur ne conna\u00eetra plus de limites car, pour la premi\u00e8re fois depuis toujours, je pourrai sortir en courant \u00e0 la premi\u00e8re goutte de pluie. De plus, si je suis gu\u00e9ri, je ferai conna\u00eetre le traitement \u00e0 tout le monde pour qu'ils puissent \u00eatre gu\u00e9ris de la m\u00eame mani\u00e8re que moi.<\/p>","protected":false},"excerpt":{"rendered":"

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