{"id":961,"date":"2015-07-22T13:35:05","date_gmt":"2015-07-22T18:35:05","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=961"},"modified":"2015-07-22T13:35:05","modified_gmt":"2015-07-22T18:35:05","slug":"leanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/07\/22\/leanne\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Leanne"},"content":{"rendered":"

07\/22\/2015:<\/p>\n

NOM<\/strong>: Leanne AGE<\/strong>: 50 ans\"LGMD2A<\/a>
\nPAYS<\/strong>: Australie
\nLGMD Sous-type<\/strong>: LGMD2A \/ Calpa\u00efnopathie<\/p>\n

\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong>:
\nJ'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 42 ans \u00e0 la suite d'une biopsie musculaire.<\/p>\n

QUELS ONT \u00c9T\u00c9 LES PREMIERS SYMPT\u00d4MES ?<\/strong>:
\nJe perdais du poids au niveau des hanches et des fessiers. Apr\u00e8s le diagnostic, d'autres \u00e9l\u00e9ments se sont mis en place, par exemple une plus grande difficult\u00e9 \u00e0 se relever d'une position accroupie, un manque d'\u00e9nergie apr\u00e8s le travail de gymnastique et une difficult\u00e9 \u00e0 monter les escaliers.<\/p>\n

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD ?<\/strong>:
\nNon, je suis le seul membre de ma famille \u00e0 avoir re\u00e7u un diagnostic de LGMD.<\/p>\n

QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD ?<\/strong>:
\nManque de spontan\u00e9it\u00e9 dans les activit\u00e9s, en particulier dans les voyages en solitaire, c'est-\u00e0-dire dans les jeux avec l'appareil photo, les achats...<\/p>\n

Devoir commencer \u00e0 demander que les choses soient faites alors que je suis toujours plus \u00e0 l'aise en tant qu'aide ou ex\u00e9cutant.<\/p>\n

Devoir r\u00e9\u00e9valuer et red\u00e9finir mes objectifs et mes espoirs pour l'avenir afin de les adapter aux limites qui existent aujourd'hui et qui continueront d'exister sans lignes directrices claires sur la mani\u00e8re et le moment o\u00f9 la LMGD progressera en raison de sa nature incoh\u00e9rente.<\/p>\n

QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION ?<\/strong>:
\nJ'esp\u00e8re que je suis une personne bonne et attentionn\u00e9e dans toutes mes relations et que j'ai contribu\u00e9 \u00e0 inculquer \u00e0 mes jeunes enfants adultes une bonne morale et de bonnes valeurs.<\/p>\n

COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR DEVENIR LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI ?<\/strong>:
\nJe suis d\u00e9finitivement plus empathique et moins press\u00e9e (hahaha) et j'accepte mieux que la vie ne soit pas toujours un \"lit de roses\"<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA LGMD ?<\/strong>:
\nJ'aimerais qu'elle soit aussi facilement identifiable par le public que des maladies telles que la SLA (MND) ; elles se battent encore pour \u00eatre reconnues, mais elles sont sans doute plus connues que la DM, le cancer, la SEP et bien d'autres, afin d'aider les gens \u00e0 comprendre et \u00e0 \u00eatre inform\u00e9s des besoins n\u00e9cessaires.<\/p>\n

SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS SOUHAITERIEZ FAIRE ?<\/strong>:
\nTous ont la m\u00eame valeur - faire une grande promenade en famille, emmener mon appareil photo \u00e0 la plage, voyager partout sans planification pr\u00e9alable, red\u00e9corer et jardiner !<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

07\/22\/2015: NAME: Leanne AGE: 50 yrs. old COUNTRY: Australia LGMD […]<\/p>","protected":false},"author":1,"featured_media":962,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,19],"class_list":["post-961","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd-2a"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Leanne<\/title>\n<meta name=\"description\" content=\"Leanne who is 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\/07\/22\/leanne\/\" \/>\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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