{"id":662,"date":"2015-05-15T09:30:18","date_gmt":"2015-05-15T14:30:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=662"},"modified":"2015-05-15T09:30:18","modified_gmt":"2015-05-15T14:30:18","slug":"marjolein","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/05\/15\/marjolein\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Marjolein"},"content":{"rendered":"

05\/15\/2015<\/p>\n

Nom :<\/strong>\u00a0 Marjolein\u00a0\u00a0\"LGMD1B<\/a><\/p>\n

L'\u00e2ge :<\/strong> 27 ans<\/p>\n

Pays :<\/strong> \u00a0\u00a0Les Pays-Bas<\/p>\n

LGMD Sous-type :<\/strong> \u00a0\u00a0LGMD1B \/ Laminopathie<\/p>\n

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

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

\u00c0 l'\u00e2ge de 4 ans, on m'a diagnostiqu\u00e9 une LGMD dont on ne connaissait pas le sous-type. \u00c0 l'\u00e2ge de 23 ans, j'ai subi un test ADN, ce qui \u00e9tait relativement nouveau aux Pays-Bas, et c'est \u00e0 ce moment-l\u00e0 qu'on a d\u00e9couvert que j'\u00e9tais atteinte d'une LGMD de type 1B.<\/p>\n

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

Ma m\u00e8re a remarqu\u00e9 que j'avais du mal \u00e0 monter les escaliers. Ma s\u0153ur a un an et neuf mois de moins et elle pouvait d\u00e9j\u00e0 monter les escaliers, mais je devais toujours utiliser mes bras pour m'aider \u00e0 monter les escaliers. Je suis \u00e9galement n\u00e9e avec une h\u00e9t\u00e9rochromie iridienne (deux yeux color\u00e9s dont un aveugle) et un palato cisis (une ouverture dans le palais), mes parents ont donc pens\u00e9 que j'avais quelque chose de plus.<\/p>\n

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

Non, je suis le seul jusqu'\u00e0 pr\u00e9sent. Nous avons cherch\u00e9 dans nos ant\u00e9c\u00e9dents, mais nous n'avons rien trouv\u00e9 qui indique que d'autres membres de la famille \u00e9taient atteints 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 devoir accepter toutes les pertes concernant les choses physiques que je ne peux plus faire. Parfois, cela va tellement vite que ma t\u00eate n'arrive pas \u00e0 suivre.<\/p>\n

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

Mes plus grandes r\u00e9ussites sont d'avoir termin\u00e9 l'universit\u00e9, d'avoir trouv\u00e9 l'\u00e2me s\u0153ur et d'avoir achet\u00e9 une maison ensemble.<\/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 ne sais pas vraiment parce que je ne sais pas ce que c'est que de ne pas avoir de LGMD. J'ai beaucoup de patience. Peut-\u00eatre est-ce d\u00fb \u00e0 toute l'attente que nous devons faire pour obtenir les choses dont nous avons besoin pour fonctionner dans notre vie....vous savez, des choses comme les fauteuils roulants et d'autres choses.<\/p>\n

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

La LGMD est une maladie tr\u00e8s frustrante. Les personnes atteintes de cette maladie doivent faire face \u00e0 des pertes jour apr\u00e8s jour.<\/p>\n

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

Si je pouvais \u00eatre gu\u00e9rie demain, je danserais toute la nuit avec mon petit ami dans un club ! Et je partirais en vacances pour faire de la randonn\u00e9e.<\/p>","protected":false},"excerpt":{"rendered":"

05\/15\/2015 Name:\u00a0 Marjolein\u00a0\u00a0 Age: 27 yrs. old Country: \u00a0\u00a0The Netherlands […]<\/p>","protected":false},"author":1,"featured_media":663,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,17],"class_list":["post-662","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-netherlands"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Marjolein<\/title>\n<meta name=\"description\" content=\"Marjolein who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/05\/15\/marjolein\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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