{"id":1315,"date":"2016-09-02T08:01:44","date_gmt":"2016-09-02T13:01:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1315"},"modified":"2016-09-02T08:01:44","modified_gmt":"2016-09-02T13:01:44","slug":"melanie-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/09\/02\/melanie-2\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : M\u00e9lanie"},"content":{"rendered":"

Interview LGMD Spotlight -\u00a0<\/strong>09\/02\/2016<\/strong><\/p>\n

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

Nom<\/strong>: M\u00e9lanie\u00a0 L'\u00e2ge<\/strong>: 29 ans\"LGMD2i<\/a><\/p>\n

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

LGMD Sous-type<\/strong> : LGMD2i (type h\u00e9t\u00e9rozygote)<\/p>\n

 <\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 4 ans par une biopsie musculaire.<\/p>\n

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

Je tombais toujours lorsque j'essayais de courir ou de monter les escaliers. Cela m'a valu de nombreux bleus et cicatrices ! De plus, je ne pouvais pas me lever du sol toute seule. Ces sympt\u00f4mes sont apparus vers l'\u00e2ge de 2 ans.<\/p>\n

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

Non, je suis le seul de ma famille \u00e0 \u00eatre atteint de LGMD.<\/p>\n

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

Le plus grand d\u00e9fi est de faire comprendre aux gens que je ne suis pas trop paresseux pour accomplir les t\u00e2ches quotidiennes, mais que je suis trop faible pour les accomplir seul. Un autre d\u00e9fi pour beaucoup d'entre nous est d'accepter qu'un fauteuil roulant soit notre meilleur ami !<\/p>\n

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

Il y a beaucoup trop d'accomplissements ! Vivre une bonne vie avec le LGMD est un accomplissement en soi ! Sur mon blog (www.littlemissturtle.com<\/a>) J'\u00e9cris sur toutes mes r\u00e9alisations et aventures sur roues.<\/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

J'ai grandi avec la LGMD. Cela a fait de moi une personne tr\u00e8s forte. Faire face \u00e0 une maladie progressive qui provoque une faiblesse et une atrophie musculaires tout en en \u00e9tant pleinement conscient est un d\u00e9fi exigeant que j'appr\u00e9cie chaque jour de ma vie ! J'ai arr\u00eat\u00e9 de travailler r\u00e9cemment pour avoir plus de temps pour faire tout ce que j'aime. Le LGMD m'a appris \u00e0 prendre les choses du bon c\u00f4t\u00e9. Profiter davantage, s'inqui\u00e9ter moins, rester positif et passer le plus de temps possible avec ses proches. C'est ma fa\u00e7on de faire !<\/p>\n

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

La LGMD est une maladie rare et d\u00e9licate. Elle ne peut \u00eatre compar\u00e9e \u00e0 aucune autre maladie comme la scl\u00e9rose en plaques (SEP), etc. Il est important d'\u00e9couter pleinement une personne atteinte de LGMD lorsqu'elle demande de l'aide, afin d'\u00e9viter de la blesser.<\/p>\n

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

Je me levais du lit toute seule, je m'habillais et je partais pour la promenade de ma vie ! Je marcherais aussi longtemps que mes pieds me porteraient.<\/p>\n

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

LGMD Spotlight interview –\u00a009\/02\/2016 \u00a0 Name:\u00a0 Melanie\u00a0 Age:\u00a0 29 yrs. 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