{"id":1050,"date":"2015-11-19T10:14:45","date_gmt":"2015-11-19T16:14:45","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1050"},"modified":"2015-11-19T10:14:45","modified_gmt":"2015-11-19T16:14:45","slug":"karen","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/11\/19\/karen\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Karen"},"content":{"rendered":"

11\/19\/2015<\/strong><\/p>\n

Nom<\/strong>: Karen AGE : 61 ans\"LGMD1B<\/a><\/p>\n

Pays<\/strong>: \u00c9tats-Unis<\/p>\n

LGMD Sous-type<\/strong>: LGMD1B \/ Laminopathie<\/p>\n

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

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 54 ans.<\/p>\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 les suivants : chutes, incapacit\u00e9 \u00e0 monter les escaliers et difficult\u00e9s \u00e0 soulever des charges.<\/p>\n

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

Ma s\u0153ur, son fils et sa fille, sa fille et un fr\u00e8re ont tous re\u00e7u le m\u00eame diagnostic. Deux d'entre eux ont \u00e9galement \u00e9t\u00e9 test\u00e9s et ne sont pas atteints. Le LGMD1B a un mode de transmission autosomique dominant, ce qui signifie que cette maladie appara\u00eet g\u00e9n\u00e9ralement \u00e0 chaque g\u00e9n\u00e9ration, sans saut.<\/p>\n

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

Les plus grands d\u00e9fis pour moi sont : se d\u00e9placer, \u00eatre capable de se lever quand je suis assis, les probl\u00e8mes de salle de bain, soulever des charges, \u00eatre capable d'atteindre des objets, charger le d\u00e9ambulateur seul dans la voiture, marcher, faire les courses et s'habiller.<\/p>\n

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

Pour moi, mes plus grandes r\u00e9alisations sont d'avoir \u00e9lev\u00e9 mes enfants et d'avoir travaill\u00e9 avec des \u00e9coliers pendant 18 ans.<\/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

Cela me rend plus compr\u00e9hensif \u00e0 l'\u00e9gard des autres et de leurs probl\u00e8mes. Je me sens chanceux d'avoir des membres de ma famille \u00e0 mes c\u00f4t\u00e9s. J'appr\u00e9cie ce qui me reste.<\/p>\n

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

Tous les handicaps ne sont pas imm\u00e9diatement visibles. Certains d'entre nous n'ont pas l'air d'avoir de probl\u00e8me et pourtant les gens les jugent. J'ai droit \u00e0 de nombreux regards lorsque je me gare sur une place de parking pour handicap\u00e9s. On me regarde... jusqu'\u00e0 ce que je doive prendre un chariot pour marcher. J'aimerais que plus de gens sachent comment nous aider - lorsque nous tombons, etc.<\/p>\n

Il est frustrant de constater que de nombreuses personnes ne connaissent pas et ne comprennent pas la diff\u00e9rence entre la maladie et la scl\u00e9rose en plaques. Je dis que je suis atteint d'une maladie neurod\u00e9g\u00e9n\u00e9rative et on me r\u00e9pond toujours que c'est une scl\u00e9rose en plaques.<\/p>\n

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

Je voudrais pouvoir tenir ma petite fille dans mes bras, mais aussi m'asseoir et jouer avec elle.<\/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":"

11\/19\/2015 Name:\u00a0 Karen \u00a0\u00a0AGE: 61 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":1051,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,16],"class_list":["post-1050","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Karen<\/title>\n<meta name=\"description\" content=\"Karen, 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\/11\/19\/karen\/\" \/>\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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