{"id":8617,"date":"2024-10-27T18:33:33","date_gmt":"2024-10-27T18:33:33","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8617"},"modified":"2024-10-27T18:33:33","modified_gmt":"2024-10-27T18:33:33","slug":"individual-with-lgmd-nancy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2024\/10\/27\/individual-with-lgmd-nancy\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Nancy"},"content":{"rendered":"

\"<\/p>\n

Nom<\/strong>: Nancy<\/p>\n

L'\u00e2ge<\/strong>: 76<\/p>\n

Pays<\/strong>: \u00c9TATS-UNIS<\/p>\n

LGMD Sous-type<\/strong>: LGMD 2C\/R5 li\u00e9 au sarcoglycane gamma<\/p>\n

 <\/p>\n

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

J'ai \u00e9t\u00e9 mal diagnostiqu\u00e9e \u00e0 25 ans avec une polymyosite et j'ai \u00e9t\u00e9 trait\u00e9e avec de la Prednisone pendant 27 ans. J'ai re\u00e7u mon premier diagnostic exact dans la cinquantaine.<\/p>\n

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

Je me souviens qu'\u00e0 l'\u00e9cole maternelle, je courais \u00e0 travers un champ et j'\u00e9tais le dernier. Mais je n'ai pas vraiment eu de probl\u00e8mes jusqu'\u00e0 ce que j'emm\u00e9nage dans une maison \u00e0 deux \u00e9tages \u00e0 l'universit\u00e9. Monter les escaliers et me lever du sol est devenu tr\u00e8s difficile.<\/p>\n

Avez-vous d'autres membres de votre famille qui sont atteints de LGMD ?\u00a0 <\/strong><\/p>\n

Non, ce n'est pas le cas.<\/p>\n

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

Mes probl\u00e8mes ont progress\u00e9 tr\u00e8s lentement. J'ai eu tr\u00e8s peu de difficult\u00e9s \u00e0 l'\u00e9cole, m\u00eame \u00e0 l'universit\u00e9. Au d\u00e9but de ma carri\u00e8re d'enseignante, j'ai eu du mal \u00e0 me lever d'une position assise, puis \u00e0 monter les trottoirs. Il est devenu difficile de lever les jambes pour conduire et la fatigue est devenue un probl\u00e8me, mais j'ai continu\u00e9 \u00e0 enseigner. J'ai toujours \u00e9t\u00e9 soutenue par un mari tr\u00e8s aimant et attentionn\u00e9, des enfants formidables, une famille, des amis et des coll\u00e8gues merveilleux, ce qui m'a permis d'accepter ma situation. J'ai d'abord utilis\u00e9 une canne, un d\u00e9ambulateur, puis un fauteuil roulant \u00e9lectrique. Les d\u00e9fis \u00e9taient l\u00e0, mais je ne me suis jamais sentie d\u00e9pass\u00e9e par eux. De plus, la lente progression de la LGMD a permis de s'adapter aux nouveaux d\u00e9fis. Aujourd'hui, je suis limit\u00e9 dans mes d\u00e9placements. Voyager est toujours une aventure. Je me suis retrouv\u00e9e dans quelques monte-charges et coinc\u00e9e dans quelques salles de bains, mais au moins, je peux en rire maintenant.<\/p>\n

Quelle est votre plus grande r\u00e9ussite ?\u00a0 <\/strong><\/p>\n

Je dirais qu'il faut garder une bonne attitude. J'ai pu me marier, avoir des jumeaux et mener une vie relativement normale tout en m'adaptant aux changements qui s'op\u00e9raient dans ma vie.<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?\u00a0 <\/strong><\/p>\n

Cela m'a appris \u00e0 \u00eatre positive et \u00e0 avoir la foi que les choses se passeront pour le mieux. Il est toujours utile d'avoir dans sa vie des personnes qui nous aiment et nous soutiennent.<\/p>\n

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

Oui, il est difficile de s'y retrouver, et certains jours sont certainement plus difficiles que d'autres, mais si vous \u00eates entour\u00e9 de personnes qui restent positives et vous encouragent, vous pouvez accomplir plus de choses que vous ne le pensez.<\/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 aider mon mari en retour de toutes les ann\u00e9es o\u00f9 il s'est occup\u00e9 de moi. J'aimerais pouvoir serrer ma famille et mes amis dans mes bras. Et pour le plaisir, j'aimerais danser.<\/p>","protected":false},"excerpt":{"rendered":"

Name:\u00a0 Nancy Age: 76 Country: USA LGMD Sub-Type: LGMD 2C\/R5 […]<\/p>","protected":false},"author":3,"featured_media":8618,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[125],"class_list":["post-8617","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Nancy - 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=\"http:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2024\/10\/27\/individual-with-lgmd-nancy\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Nancy - 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