{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Darlene"},"content":{"rendered":"

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n

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

Nom<\/strong>: Darlene\u00a0\u00a0\u00a0 L'\u00e2ge<\/strong>\u00e2ge : 65 ans\"\"<\/a><\/p>\n

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

LGMD Sous-type<\/strong>: Myopathie de Miyoshi sans dysferline<\/p>\n

 <\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9 \u00e0 l'\u00e2ge de 64 ans.<\/p>\n

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

R\u00e9trospectivement, je me rends compte que les sympt\u00f4mes ont commenc\u00e9 \u00e0 se manifester dans la quarantaine, voire plus t\u00f4t. J'ai toujours \u00e9t\u00e9 actif, mais au fil des ans, la course \u00e0 pied, le ski et le patinage sont devenus de plus en plus difficiles, alors j'ai pratiqu\u00e9 d'autres activit\u00e9s comme le v\u00e9lo, les kettlebells, les poids et l'entra\u00eenement CrossFit. Je faisais face aux sympt\u00f4mes de la maladie de Raynaud en m'habillant plus chaudement. Au d\u00e9but de la soixantaine, une fonte musculaire visible au niveau des mollets a marqu\u00e9 le d\u00e9but de mon parcours d'un an vers le diagnostic. \u00c0 cette \u00e9poque, 80-90% des deux muscles gastrocn\u00e9miens avaient \u00e9t\u00e9 remplac\u00e9s par de la graisse.<\/p>\n

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

Non, mais deux s\u0153urs ont souffert de diab\u00e8te juv\u00e9nile. L'une d'elles est d\u00e9c\u00e9d\u00e9e de complications cardiaques li\u00e9es \u00e0 la maladie \u00e0 l'\u00e2ge de 53 ans. L'autre, aujourd'hui \u00e2g\u00e9e de 58 ans et de sant\u00e9 fragile, s'est fait implanter un rein\/pancr\u00e9as \u00e0 39 ans.<\/p>\n

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

En tant que copropri\u00e9taire d'une salle de CrossFit, j'essaie constamment de trouver le bon \u00e9quilibre entre un travail suffisamment intense pour solliciter mes muscles sains et les maintenir forts et mobiles, mais pas trop intense pour ne pas d\u00e9truire mes muscles \u00e0 risque. Jusqu'\u00e0 pr\u00e9sent, l'impact de la maladie a \u00e9t\u00e9 minime sur ma vie : je continue \u00e0 para\u00eetre, \u00e0 me sentir et \u00e0 bouger plus jeune que la moyenne des personnes \u00e2g\u00e9es de 65 ans. J'essaie de me concentrer sur ce que je suis capable de faire chaque jour et de me rappeler que tout le monde, et pas seulement moi, est confront\u00e9 \u00e0 une maladie d\u00e9g\u00e9n\u00e9rative progressive appel\u00e9e vieillissement.<\/p>\n

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

En grandissant avec des s\u0153urs diab\u00e9tiques, j'ai compris l'importance d'une bonne alimentation et d'une activit\u00e9 physique r\u00e9guli\u00e8re. Je comprends que ce que je mets dans ma bouche a de l'importance, et qu'un sommeil ad\u00e9quat et la r\u00e9cup\u00e9ration du stress sont essentiels, quel que soit le mal dont on souffre. Bien que je ne puisse pas \u00eatre certaine que des habitudes saines contribuent \u00e0 minimiser mes sympt\u00f4mes, je choisis de croire que c'est le cas, et je continuerai \u00e0 \u00eatre aussi proactive que possible \u00e0 cet \u00e9gard. En tant qu'entra\u00eeneur, je suis en mesure de donner l'exemple d'excellentes pratiques de sant\u00e9 et de travailler en \u00e9troite collaboration avec nos membres afin qu'ils puissent eux-m\u00eames en r\u00e9colter les fruits. Je suis devenu entra\u00eeneur de CrossFit \u00e0 l'\u00e2ge de 60 ans (apr\u00e8s une carri\u00e8re de 35 ans comme journaliste de presse \u00e9crite) et il est gratifiant de voir les autres vous dire que vous les avez aid\u00e9s \u00e0 changer leur vie pour le mieux.<\/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

Des d\u00e9cennies avant mon diagnostic officiel, des limitations physiques d\u00e9routantes m'ont pouss\u00e9 \u00e0 trouver d'autres moyens d'\u00eatre actif et de contribuer \u00e0 une communaut\u00e9 d'athl\u00e8tes d'endurance de plein air comp\u00e9titifs. La r\u00e9silience, l'activit\u00e9 physique et la force font partie de mon identit\u00e9 et je m'efforcerai de m'y tenir aussi longtemps que j'en serai capable. Je compte sur cet \u00e9tat d'esprit pour m'aider \u00e0 faire face aux incertitudes que l'avenir me r\u00e9serve.<\/p>\n

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

La dystrophie musculaire est une maladie rare dont les variations individuelles sont infinies. Comme il n'existe pas de rem\u00e8de et que les soci\u00e9t\u00e9s pharmaceutiques n'ont gu\u00e8re d'int\u00e9r\u00eat financier \u00e0 en trouver un, le diagnostic met souvent fin \u00e0 l'int\u00e9r\u00eat que les professionnels de la sant\u00e9 portent \u00e0 votre personne. Trouvez du soutien l\u00e0 o\u00f9 vous le pouvez et soyez votre propre d\u00e9fenseur.<\/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 beaucoup faire du ski de fond. Nous vivons sur un r\u00e9seau de pistes qui se connecte \u00e0 la piste de ski American Birkebeiner, longue de 54 km, et j'aimerais conna\u00eetre l'\u00e9motion de glisser gracieusement le long des collines et des vall\u00e9es de cette magnifique piste foresti\u00e8re.<\/p>\n

 <\/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 \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old […]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Darlene - 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\/04\/08\/darlene\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Darlene - 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