{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Donavon"},"content":{"rendered":"

03\/12\/2015:<\/p>\n

Nom<\/strong>: Donavon\u00a0 L'\u00e2ge<\/strong>: 52\"LGMD2D<\/a><\/p>\n

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

LGMD Sous-type<\/strong>: LGMD2D<\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 16 ans<\/p>\n

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

Je n'ai jamais pu courir tr\u00e8s vite et j'avais du mal \u00e0 monter les escaliers. Nous vivions dans une ferme une partie du temps et lorsqu'il s'agissait de faire les t\u00e2ches m\u00e9nag\u00e8res, je n'\u00e9tais pas capable de soulever un sac de fourrage plein.<\/p>\n

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

Oui, j'ai quatre s\u0153urs et deux ni\u00e8ces atteintes de LGMD.<\/p>\n

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

Toute l'aide dont j'ai eu besoin au fil des ans et qui continue de s'accro\u00eetre chaque ann\u00e9e. Je suis tr\u00e8s reconnaissant \u00e0 ma femme et aux amis qui m'ont aid\u00e9 au fil des ans. Ma s\u0153ur Monica est d\u00e9c\u00e9d\u00e9e en 2012 \u00e0 la suite de complications de la maladie de von Willebrand, ce qui me fait penser que je m'affaiblis.<\/p>\n

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

Je suis la premi\u00e8re personne \u00e0 b\u00e9n\u00e9ficier d'une th\u00e9rapie g\u00e9nique pour la dystrophie musculaire. J'ai appel\u00e9 un m\u00e9decin tous les mois apr\u00e8s que mon d\u00e9faut g\u00e9n\u00e9tique a \u00e9t\u00e9 identifi\u00e9 et lorsqu'ils ont commenc\u00e9 le premier essai, je me suis port\u00e9 volontaire. La th\u00e9rapie g\u00e9nique m'a ouvert de nombreuses opportunit\u00e9s, comme mon t\u00e9moignage au S\u00e9nat des \u00c9tats-Unis. J'ai aid\u00e9 \u00e0 faire pression sur le premier MD Care Act \u00e0 Washington DC. J'ai \u00e9galement si\u00e9g\u00e9 pendant six ans au sein d'un comit\u00e9 de surveillance des Instituts nationaux de la sant\u00e9.<\/p>\n

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

\u00c0 cause de ma LGMD, je pense que j'ai d\u00fb me battre davantage pour obtenir un emploi... Certaines personnes entendent dire que j'ai une dystrophie musculaire ou me voient dans un fauteuil roulant et pensent que je ne suis pas capable de faire quoi que ce soit. En cons\u00e9quence, j'ai d\u00e9velopp\u00e9 une approche tr\u00e8s d\u00e9termin\u00e9e et optimiste dans de nombreux aspects de ma vie. Je vois les autres personnes handicap\u00e9es diff\u00e9remment car je connais certaines des difficult\u00e9s qu'elles rencontrent au quotidien. Je suis reconnaissant d'\u00eatre chr\u00e9tien car un jour, s'il n'y a pas de rem\u00e8de de mon vivant, il n'y aura pas de maladie au paradis.<\/p>\n

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

Je pense que nous sommes tr\u00e8s proches d'un traitement ou d'une gu\u00e9rison. J'ai particip\u00e9 au premier essai de th\u00e9rapie g\u00e9nique en 1999 et je suis tr\u00e8s enthousiaste \u00e0 l'id\u00e9e de voir d\u00e9marrer le prochain essai de th\u00e9rapie g\u00e9nique qui utilisera le syst\u00e8me sanguin pour d\u00e9livrer le nouveau vecteur.<\/p>\n

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

Conduire une voiture ou un pick-up plut\u00f4t qu'une camionnette. Un jour, j'aimerais avoir une autre Pontiac GTO.<\/p>","protected":false},"excerpt":{"rendered":"

03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/03\/12\/donavon\/\" \/>\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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