{"id":1440,"date":"2017-03-25T10:00:37","date_gmt":"2017-03-25T15:00:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1440"},"modified":"2017-03-25T10:00:37","modified_gmt":"2017-03-25T15:00:37","slug":"cecilia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Cecilia"},"content":{"rendered":"

LGMD Spotlight Interview<\/strong><\/p>\n

Nom :<\/strong> Cecilia \u00a0\u00a0AGE :<\/strong> 36 ans\"\"<\/a><\/p>\n

Pays :<\/strong> Argentine<\/p>\n

LGMD Sous-type :\u00a0 <\/strong>LGMD2A\/Calpa\u00efnopathie<\/p>\n

 <\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 12 ans.<\/p>\n

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

J'ai commenc\u00e9 \u00e0 marcher sur la pointe des pieds. De plus, d\u00e8s mon plus jeune \u00e2ge, ma m\u00e8re a remarqu\u00e9 que j'avais des r\u00e9actions retard\u00e9es, par exemple lorsque je courais apr\u00e8s une balle.<\/p>\n

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

Non, je suis le seul de ma famille \u00e0 \u00eatre 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 a \u00e9t\u00e9 de s'habituer aux premiers changements, aux premi\u00e8res choses que je ne pouvais plus faire : par exemple, monter les escaliers et me lever du sol. \u00c0 un stade plus avanc\u00e9, il faut trouver des strat\u00e9gies pour pouvoir se lever du lit, d'une chaise, etc., puis faire le deuil de la perte de la capacit\u00e9 de marcher et commencer \u00e0 utiliser un fauteuil roulant ou un scooter \u00e0 temps partiel ou \u00e0 temps plein.<\/p>\n

Trouver l'\u00e9quilibre et conna\u00eetre les limites de mon corps a \u00e9galement \u00e9t\u00e9 un d\u00e9fi. Savoir jusqu'o\u00f9 je pouvais aller sans m'\u00e9puiser, d\u00e9cider ce que je devais faire moi-m\u00eame et quand je devais demander de l'aide.<\/p>\n

La bonne chose est que j'ai appris \u00e0 accepter les changements, \u00e0 \u00eatre intelligente et cr\u00e9ative, \u00e0 trouver des solutions pour faire les choses autrement et \u00e0 chercher des alternatives.<\/p>\n

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

Ma plus grande r\u00e9ussite est d'avoir toujours r\u00e9alis\u00e9 ce que je voulais et de continuer \u00e0 le faire. Ma famille y est pour beaucoup, elle m'a toujours appris que la maladie n'est pas un obstacle ou une excuse, que tout est possible si l'on peut \"trouver un chemin\", qu'il existe une autre voie, qui peut comporter des obstacles, mais qui nous m\u00e8nera \u00e0 notre but.<\/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

Si je n'avais pas eu cette maladie, je ne serais pas la personne que je suis. Les d\u00e9fis m'ont permis de grandir et de devenir forte. Je ne nie pas ce que je ne peux pas faire et les circonstances qui m'affectent. J'ai d\u00e9velopp\u00e9 la capacit\u00e9 d'affronter avec une attitude positive les changements qui se produisent. Je sais que les choses finissent toujours par s'arranger.<\/p>\n

Cela a influenc\u00e9 ma carri\u00e8re professionnelle et le domaine dans lequel j'ai choisi de travailler. Je travaille dans des organisations non gouvernementales au nom des droits des personnes handicap\u00e9es, en particulier en ce qui concerne l'accessibilit\u00e9 physique. Ici, en Argentine, je fais \u00e9galement partie de l'Association de lutte contre la dystrophie musculaire et j'\u00e9cris des articles pour encourager d'autres personnes qui vivent des situations qui entra\u00eenent un handicap.<\/p>\n

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

    \n
  1. Que cette maladie, comme beaucoup d'autres, ne rend pas les gens moins bons que les autres.<\/li>\n
  2. Briser les mythes, comme celui qui veut que nous soyons faibles et fragiles.<\/li>\n
  3. D\u00e9passer les pr\u00e9jug\u00e9s.<\/li>\n
  4. Pour qu'il y ait des droits \u00e9gaux : que nous puissions \u00e9tudier, travailler, tomber amoureux et accomplir tant de choses.<\/li>\n<\/ol>\n

    Je suis une personne d\u00e9termin\u00e9e \u00e0 vivre pleinement sa vie. N'est-ce pas ce que tout le monde recherche ?<\/p>\n

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

    Je peux imaginer tellement de choses ! Rien de tr\u00e8s sp\u00e9cial, mais juste me reconnecter avec mon corps : courir, sauter, monter les escaliers, faire du v\u00e9lo, jouer par terre avec mon neveu, aller dans tous les endroits o\u00f9 je n'ai pas pu entrer.<\/p>\n

    Et il est clair que je serais plus motiv\u00e9e pour continuer \u00e0 aider ceux qui attendent toujours un rem\u00e8de ! J'en fais partie.<\/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 Spotlight Interview Name: Cecilia \u00a0\u00a0AGE: 36 years Country: Argentina […]<\/p>","protected":false},"author":1,"featured_media":1439,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[72],"class_list":["post-1440","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-argentina"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cecilia - 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\/03\/25\/cecilia\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cecilia - 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