{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : M\u00e9lanie"},"content":{"rendered":"

LGMD \"Spotlight Interview\" (en anglais)<\/p>\n

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NOM<\/strong>: M\u00e9lanie \u00a0 AGE<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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PAYS :<\/strong> \u00c9TATS-UNIS<\/span><\/span><\/div>\n<\/div>\n
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LGMD Sous-type<\/strong>: LGMD2b (Dysferlinopathie\/myopathie de Miyoshi) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong><\/div>\n<\/div>\n
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J'ai \u00e9t\u00e9 diagnostiqu\u00e9e une semaine avant mon 29e anniversaire.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUELS ONT \u00c9T\u00c9 LES PREMIERS SYMPT\u00d4MES ? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Je ne pouvais pas me lever sur mes orteils, j'avais des orteils en marteau (d\u00e9formation du pied), j'avais mal et j'\u00e9tais fatigu\u00e9e en permanence.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD :<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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Non, pas un seul !<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUEL EST, SELON VOUS, LE PLUS GRAND D\u00c9FI \u00c0 RELEVER POUR VIVRE AVEC LA LGMD : <\/span><\/span><\/strong><\/div>\n<\/div>\n
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La perte de la capacit\u00e9 \u00e0 accomplir les t\u00e2ches et activit\u00e9s quotidiennes a rendu la vie tr\u00e8s difficile. Il faut planifier chaque petite chose \u00e0 l'avance. Cela devient \u00e9galement difficile lorsque les gens ne comprennent pas ce fait. Lorsque vous n'avez pas l'air malade, les gens ne prennent pas vos besoins au s\u00e9rieux.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION : <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Obtenir ma ma\u00eetrise et d\u00e9crocher un excellent emploi au sein du gouvernement f\u00e9d\u00e9ral (tout en \u00e9tant malade tous les jours).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI : <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Lorsque j'ai \u00e9t\u00e9 diagnostiqu\u00e9e pour la premi\u00e8re fois, je me suis sentie impuissante et seule. Je ne connaissais pas d'autre personne atteinte de cette forme de diab\u00e8te et j'avais peur. Au lieu de bouder ou de me laisser abattre, je me suis dit \"pourquoi ne pas faire quelque chose ?\". J'ai donc commenc\u00e9 \u00e0 me renseigner sur la MDA et sur la mani\u00e8re de collecter des fonds. J'ai cr\u00e9\u00e9 une \u00e9quipe de la MDA Muscle Walk et, depuis, j'en ai une chaque ann\u00e9e. Puis j'ai d\u00e9cid\u00e9 de faire tout ce que je pouvais pendant que je le pouvais encore (puisque je perdais la capacit\u00e9 de marcher). C'est ce que j'ai fait. J'ai voyag\u00e9 partout et parfois seul. J'ai m\u00eame fait du parachutisme. Je crois que ce diagnostic a fait de moi une personne encore plus positive. Il a certainement fait de moi une personne encore plus forte. La plupart des exp\u00e9riences que j'ai v\u00e9cues au cours des quatre derni\u00e8res ann\u00e9es sont le r\u00e9sultat direct du fait que je me suis battue contre le LGMD et que j'ai fait mentir les pronostics.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD :<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Tout d'abord, la maladie ne nous d\u00e9finit pas. Nous sommes qui nous sommes, et il se trouve que nous sommes atteints de cette terrible maladie. Deuxi\u00e8mement, ce n'est pas parce que nous avons l'air bien que nous nous sentons bien. Troisi\u00e8mement, la dystrophie musculaire n'est pas la scl\u00e9rose en plaques.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS FERIEZ.<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Dansez comme je le faisais avant ! Puis faire des randonn\u00e9es dans tous les parcs nationaux et prendre des tas de photos extraordinaires. Puis courir un marathon ou faire une course d'obstacles.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews. <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

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