{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Hillary"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>NOM :<\/strong>\u00a0 Hillary \u00a0\u00a0<strong>AGE :<\/strong>\u00a0 32 ans<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2A-Hillary-K.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1579 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2A-Hillary-K-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>PAYS :<\/strong>\u00a0 \u00c9TATS-UNIS<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD Sous-type :<\/strong>\u00a0 LGMD2A \/ Calpa\u00efnopathie<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 13 ans.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 des tendons d'Achille tendus, des vo\u00fbtes plantaires hautes et un coureur lent. J'ai commenc\u00e9 \u00e0 courir comme mon fr\u00e8re a\u00een\u00e9, qui a \u00e9t\u00e9 diagnostiqu\u00e9 LGMD2A en m\u00eame temps que moi.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Oui, mon fr\u00e8re a\u00een\u00e9 (5 ans de plus) est \u00e9galement atteint de LGMD2A.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Le plus difficile avec la LGMD2A, c'est qu'elle est en constante \u00e9volution. Au cours des 20 derni\u00e8res ann\u00e9es, j'ai trouv\u00e9 des moyens cr\u00e9atifs pour accomplir mes t\u00e2ches quotidiennes. Des t\u00e2ches aussi simples que d'aller aux toilettes de mani\u00e8re autonome ont d\u00fb \u00eatre adapt\u00e9es et recr\u00e9\u00e9es \u00e0 de nombreuses reprises. \u00c0 un moment donn\u00e9, je me servais de mes avant-bras, de mon front et des barres d'appui pour grimper litt\u00e9ralement le long du mur \u00e0 partir d'une position assise sur les toilettes. Comme la maladie \u00e9volue constamment, mes contournements et mes \"solutions\" ne fonctionnent que pendant quelques ann\u00e9es, puis je me remets \u00e0 la planche \u00e0 dessin pour trouver quelque chose de nouveau.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Ma famille est ma plus grande r\u00e9ussite. Je me suis mari\u00e9e \u00e0 l'\u00e2ge de 23 ans, alors que j'\u00e9tais encore tr\u00e8s valide. En l'espace de neuf ans, je suis maintenant une personne en fauteuil roulant \u00e0 plein temps. Mon mari et moi avons eu le privil\u00e8ge d'adopter deux magnifiques enfants. Mon mari et mes deux enfants sont tout pour moi. La vie n'est pas toujours facile, mais avec ces trois-l\u00e0 \u00e0 mes c\u00f4t\u00e9s (ou sur mes genoux), je me rappelle \u00e0 quel point la vie est belle. Lorsque j'ai \u00e9t\u00e9 diagnostiqu\u00e9e, je m'inqui\u00e9tais toujours de savoir comment je pourrais courir apr\u00e8s mes enfants ou les emp\u00eacher de s'enfuir dans la rue. Je ne me suis jamais imagin\u00e9e dans un fauteuil roulant en train de leur courir apr\u00e8s ! Saviez-vous que les fauteuils roulants peuvent rouler jusqu'\u00e0 7 miles \u00e0 l'heure ? En fait, je n'avais aucune raison de m'inqui\u00e9ter. Je peux travailler \u00e0 temps partiel depuis chez moi et concilier mes responsabilit\u00e9s d'\u00e9pouse et de m\u00e8re.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">\u00c0 l'\u00e2ge de 13 ans, je jouais au basket-ball, au volley-ball et au softball. Le sport \u00e9tait tout pour moi. Comme on peut l'imaginer, le diagnostic a \u00e9t\u00e9 un choc total et j'ai \u00e9t\u00e9 dans le d\u00e9ni pendant un certain temps. Lors des essais pour l'\u00e9quipe de volley-ball JV, j'ai \u00e9t\u00e9 compl\u00e8tement choqu\u00e9e par le fait que mes entra\u00eeneurs pensaient que je n'\u00e9tais pas \u00e0 la hauteur. Ils ont d\u00e9cid\u00e9 de me laisser jouer, mais \u00e0 la fin de la saison, j'avais accept\u00e9 le fait que je n'\u00e9tais pas aussi rapide que mes co\u00e9quipiers. Cela a \u00e9t\u00e9 un v\u00e9ritable choc \u00e9motionnel. Heureusement, sous l'influence de mes parents et de mes amis, j'ai d\u00e9cid\u00e9 d'essayer de nouvelles choses et je me suis pr\u00e9sent\u00e9e au conseil \u00e9tudiant et j'ai \u00e9t\u00e9 r\u00e9dactrice dans l'\u00e9quipe de l'album de fin d'ann\u00e9e. Le fait d'\u00eatre occup\u00e9e m'a aid\u00e9e et j'ai d\u00e9couvert de nouvelles choses que j'aimais. Les exp\u00e9riences et les opportunit\u00e9s que j'ai eues m'ont aid\u00e9e \u00e0 obtenir une bourse pour l'universit\u00e9 et m'ont permis d'acc\u00e9der \u00e0 d'autres opportunit\u00e9s de leadership sur le campus de mon universit\u00e9. En outre, j'ai eu l'occasion de travailler dans l'industrie h\u00f4teli\u00e8re au cours des 14 derni\u00e8res ann\u00e9es et j'ai maintenant un poste qui me permet de travailler \u00e0 domicile. Rester occup\u00e9 a toujours \u00e9t\u00e9 l'un des meilleurs rem\u00e8des pour ma sant\u00e9 mentale et, pour \u00eatre honn\u00eate, je ne me souviens pas d'une \u00e9poque o\u00f9 je n'\u00e9tais pas occup\u00e9 !<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Sensibiliser le public aux maladies rares n'est jamais une t\u00e2che facile. Lorsque vous voyez les pompiers remplir les bottes ou les Shamrocks dans les commerces locaux, continuez \u00e0 faire des dons. Cet argent permet de faire avancer la recherche et d'envoyer des enfants dans les camps de MDA. J'ai l'espoir que les recherches men\u00e9es aujourd'hui changeront des vies.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">La premi\u00e8re chose que je ferais serait de courir apr\u00e8s mes enfants, de les lancer en l'air et de jouer jusqu'\u00e0 ce que j'aie le vertige !<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* 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<\/span> \u00a0<a href=\"https:\/\/www.lgmd-info.org\/fr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Hillary \u00a0\u00a0AGE:\u00a0 32 yrs. old COUNTRY:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1579,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1580","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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