{"id":3755,"date":"2020-11-15T14:15:25","date_gmt":"2020-11-15T20:15:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3755"},"modified":"2024-02-09T14:24:26","modified_gmt":"2024-02-09T14:24:26","slug":"individual-with-lgmd-neil","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"INDIVIDU AVEC LGMD : Neil"},"content":{"rendered":"

\"\"<\/a><\/p>\n

Nom : Neil Kramer<\/strong><\/p>\n

L'\u00e2ge<\/strong>: \u00a050<\/p>\n

Pays<\/strong>: \u00c9tats-Unis d'Am\u00e9rique<\/p>\n

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

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

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 47 ans.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>: J'ai commenc\u00e9 \u00e0 avoir des faiblesses dans les jambes, ce qui a entra\u00een\u00e9 des chutes fr\u00e9quentes. J'ai remarqu\u00e9 que j'avais progressivement des probl\u00e8mes d'\u00e9quilibre, que je me levais d'une chaise, que je montais les escaliers et que mes genoux l\u00e2chaient, ce qui provoquait des chutes. Un jour, il y a 4 ans, j'ai fait une mauvaise chute et je suis all\u00e9e aux urgences. Le m\u00e9decin m'a recommand\u00e9 de consulter un neurologue. Lors de ma premi\u00e8re visite, le m\u00e9decin m'a inform\u00e9 que les probl\u00e8mes ne concernaient pas seulement mes jambes, mais aussi mes bras. Je me souviens m'\u00eatre sentie impuissante et effray\u00e9e. Il a fallu plusieurs mois pour que je re\u00e7oive enfin un diagnostic. Ces mois ont \u00e9t\u00e9 pour le moins stressants. Pendant que le neurologue effectuait tous les tests, nous avons eu de nombreuses discussions. Lors d'une visite, nous avons parl\u00e9 de mon enfance. Tout d'un coup, les difficult\u00e9s que j'avais rencontr\u00e9es dans mon enfance ont pris tout leur sens.<\/p>\n

Enfant, je n'ai jamais pu faire de pompes, de tractions, grimper \u00e0 la corde en cours de gymnastique, courir tr\u00e8s vite, etc. Je ne pouvais pas non plus soulever des objets lourds. Je pensais que je n'\u00e9tais qu'un enfant faible et ringard. J'ai adopt\u00e9 la musique et je suis devenu un fanatique.<\/p>\n

Lorsque j'ai re\u00e7u le diagnostic de dystrophie musculaire des ceintures, beaucoup de choses dans ma vie ont sembl\u00e9 avoir un sens.<\/p>\n

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

Non, aucun membre de ma famille n'est atteint de LGMD. Je suppose que mon cas est un myst\u00e8re.<\/p>\n

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

Je fais de mon mieux pour bouger le plus possible afin de ralentir la progression de la maladie ; cependant, je remarque que mes jambes s'affaiblissent. Je dois faire plus attention pour \u00e9viter les chutes. Je dois \u00eatre plus \u00e0 l'\u00e9coute de mon corps pour d\u00e9terminer quand je dois utiliser mon d\u00e9ambulateur ou mon scooter. Je sais que je ne devrais pas \u00eatre g\u00ean\u00e9, mais le d\u00e9fi est de surmonter la g\u00eane et d'\u00eatre qui je suis. Les dispositifs de mobilit\u00e9 sont un outil qui m'aide \u00e0 conserver mon ind\u00e9pendance.<\/p>\n

Je commence \u00e9galement \u00e0 remarquer une faiblesse dans la partie sup\u00e9rieure de mes bras. Je me suis tellement concentr\u00e9e sur mes jambes, mais je commence \u00e0 m'inqui\u00e9ter des difficult\u00e9s suppl\u00e9mentaires qui se pr\u00e9senteront \u00e0 l'avenir. Le d\u00e9fi consiste \u00e0 ne pas s'inqui\u00e9ter de l'avenir, mais \u00e0 profiter de chaque jour. J'ai une famille merveilleuse et un environnement de travail favorable qui m'aide \u00e0 poursuivre ma carri\u00e8re avec succ\u00e8s.<\/p>\n

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

Je crois que ma plus grande r\u00e9ussite a \u00e9t\u00e9 ma carri\u00e8re dans les services sociaux. Je travaille pour une agence appel\u00e9e le Centre r\u00e9gional de San Diego (SDRC). Nous coordonnons les services pour plus de 32 000 personnes souffrant de troubles du d\u00e9veloppement et leurs familles. Le travail que nous accomplissons pour notre communaut\u00e9 est extraordinaire. Nos clients sont notre priorit\u00e9 absolue. Ces derni\u00e8res ann\u00e9es, j'ai travaill\u00e9 en tant que liaison l\u00e9gislative pour notre agence. \u00c9tant donn\u00e9 que notre financement provient de l'\u00c9tat de Californie, je dois fr\u00e9quemment rencontrer les l\u00e9gislateurs de notre \u00c9tat et leur personnel pour veiller \u00e0 ce que notre syst\u00e8me de prestation de services pour nos clients et leurs familles reste intact. Je suis un v\u00e9ritable d\u00e9fenseur de notre syst\u00e8me. Je pense que nos efforts ont \u00e9t\u00e9 couronn\u00e9s de succ\u00e8s.<\/p>\n

Maintenant que j'ai \u00e9t\u00e9 diagnostiqu\u00e9e LGMD, je peux comprendre certains des clients que nous servons et qui d\u00e9pendent d'appareils de mobilit\u00e9 pour leur ind\u00e9pendance. Mon diagnostic n'a fait que renforcer ma passion pour la d\u00e9fense, non seulement des clients que je sers au CRDS, mais aussi de TOUTES les personnes handicap\u00e9es.<\/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

Le LGMD, bien que tr\u00e8s stimulant, m'a permis de prendre davantage conscience des besoins des personnes handicap\u00e9es dans notre communaut\u00e9. Comme nous tous, j'ai de bons jours et des jours o\u00f9 mes jambes et mes bras sont lourds et fatigu\u00e9s. J'essaie de surmonter les mauvais jours pour m'assurer que je pratique une activit\u00e9 physique afin de ralentir la progression de la maladie. Je suis devenue plus forte \u00e9motionnellement parce que je ne veux pas que la LGMD m'emp\u00eache de vivre ma vie. Je suis plus d\u00e9termin\u00e9e \u00e0 d\u00e9fendre ma cause et je fais tout ce que je peux pour sensibiliser le public \u00e0 la LGMD et \u00e0 toutes les maladies li\u00e9es \u00e0 la dystrophie musculaire.<\/p>\n

J'ai toujours exerc\u00e9 une profession li\u00e9e au service public. J'ai toujours eu envie de me pr\u00e9senter \u00e0 des fonctions publiques. Malgr\u00e9 le LGMD, je suis aujourd'hui candidate au conseil municipal de ma ville. L'une de mes principales priorit\u00e9s est de d\u00e9fendre les int\u00e9r\u00eats des personnes handicap\u00e9es et des personnes \u00e2g\u00e9es. Je veux garantir un meilleur acc\u00e8s \u00e0 nos espaces ouverts, \u00e0 nos parcs et \u00e0 nos r\u00e9seaux de sentiers. La LGMD ne m'emp\u00eachera pas de r\u00e9aliser mes r\u00eaves !<\/p>\n

Que voulez-vous que le monde sache sur le LGMD ?<\/strong>: \u00a0<\/strong><\/p>\n

Je veux que le monde sache que certains handicaps ne sont pas visibles. Je peux encore marcher et j'essaie de le faire aussi souvent que possible. Lorsque mes jambes sont fatigu\u00e9es ou lourdes, j'utilise un d\u00e9ambulateur. Pour les longues distances ou les foules, j'ai besoin de mon scooter ou de mon fauteuil roulant. Lorsque j'utilise la place r\u00e9serv\u00e9e aux handicap\u00e9s et que je n'ai pas besoin de mon d\u00e9ambulateur, les gens me regardent parfois sans comprendre pourquoi j'ai besoin de cette place. Mes jambes sont tr\u00e8s faibles et je risque de tomber. Je ne dois pas me sentir g\u00ean\u00e9 ou honteux parce que j'ai besoin d'utiliser la place de parking pour handicap\u00e9s.<\/p>\n

Je veux sensibiliser le public \u00e0 la LGMD, collecter des fonds pour la recherche sur la LGMD et d\u00e9fendre les int\u00e9r\u00eats de tous ceux qui souffrent de cette maladie.<\/p>\n

Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>: \u00a0<\/strong><\/p>\n

J'aimerais pouvoir faire du patin \u00e0 roulettes comme au lyc\u00e9e, jouer au golf avec mon fils, faire une partie de baseball et peut-\u00eatre apprendre \u00e0 surfer. Je vis en Californie du Sud !<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3837,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3755","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Neil - 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\/2020\/11\/15\/individual-with-lgmd-neil\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL 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