{"id":1403,"date":"2017-01-28T09:30:12","date_gmt":"2017-01-28T15:30:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1403"},"modified":"2017-01-28T09:30:12","modified_gmt":"2017-01-28T15:30:12","slug":"brenda","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/01\/28\/brenda\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Brenda"},"content":{"rendered":"

LGMD \"Spotlight Interview\" (en anglais)<\/p>\n

Nom<\/strong>: Brenda\u00a0 L'\u00e2ge<\/strong>: 55 ans\"\"<\/a><\/p>\n

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

LGMD Sous-type<\/strong>: LGMD2A - \u00e9galement connue sous le nom de Calpainopathie<\/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 50 ans.<\/p>\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 les suivants : chute, chute du poignet, d\u00e9marche inhabituelle en marchant avec les hanches en avant, crampes dans les jambes et perte de poids rapide.<\/p>\n

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

Aucun autre membre de la famille n'est 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 de la vie avec le LGMD est que j'ai l'air normal et que la maladie est \u00e9ternelle.<\/p>\n

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

Parmi mes plus grands exploits, on peut citer : le ski dans les Alpes, le kayak de mer sur la c\u00f4te atlantique, le kayak de mer sur le lac Champlain et le roller dans tout l'\u00c9tat du Vermont. En outre, j'ai \u00e9lev\u00e9 une fille de 17 ans en bonne sant\u00e9 et je suis mari\u00e9e depuis 25 ans \u00e0 un mari exceptionnel qui m'aime tendrement, quoi qu'il arrive ! J'ai \u00e9galement conserv\u00e9 mon poste de directrice des loisirs dans le seul centre de vill\u00e9giature 5 \u00e9toiles du Vermont pendant 22 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

J'ai une attitude positive et je reste en bonne sant\u00e9 et heureux quoi qu'il arrive.<\/p>\n

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

Je veux dire \u00e0 tout le monde que je suis toujours la m\u00eame Brenda qui dansait chaque fois qu'elle en avait l'occasion et qui faisait la roue et des flexions arri\u00e8re sur la plage de sable des falaises de Gay Head \u00e0 Martha's Vineyard. Celle qui a \u00e9t\u00e9 la premi\u00e8re \u00e0 faire du slalom sur des skis nautiques, la premi\u00e8re \u00e0 faire du ski alpin, du ski de fond et du t\u00e9l\u00e9mark, et la premi\u00e8re \u00e0 skier dans les Alpes en Europe. Le premier \u00e0 skier la paroi du Mont Washington, Tuckerman's Ravine. Le premier \u00e0 skier toutes les pistes de diamant noir et double diamant noir de la station de ski de Killington dans le Vermont, y compris toutes les pistes de bois pendant 30 ans. Je ne laisserai jamais cette maladie m'\u00e9tiqueter ou me clouer au lit. Le Dr Anthony Amato m'a dit \"Bonne et longue vie\" lorsque j'ai \u00e9t\u00e9 diagnostiqu\u00e9 \u00e0 l'\u00e2ge de 50 ans. Je veux faire savoir au monde qu'une personne handicap\u00e9e est comme vous !<\/p>\n

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

Danser avec mon mari sans fatigue. Skier sur les pistes de poudreuse avec des virages parfaits. Marcher sur une plage de sable sans fatigue. Faire de la randonn\u00e9e \u00e0 un bon rythme sans douleur articulaire ni chute de poignet. Faire du v\u00e9lo avec les femmes et \u00eatre capable de les suivre. Faire du v\u00e9lo \u00e0 pneus sur la neige.<\/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” Name:\u00a0 Brenda\u00a0 Age:\u00a0 55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1404,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1403","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Brenda - 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=\"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/01\/28\/brenda\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Brenda - 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