\n
\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?
\nJ'ai commenc\u00e9 \u00e0 pr\u00e9senter des sympt\u00f4mes \u00e0 l'\u00e2ge de 16 ans, mais le diagnostic n'a \u00e9t\u00e9 pos\u00e9 que vers 22 ans.<\/p>\n
QUELS ONT \u00c9T\u00c9 VOS PREMIERS SYMPT\u00d4MES :
\nMon premier sympt\u00f4me a \u00e9t\u00e9 une tension des tendons. Mon m\u00e9decin m'a envoy\u00e9 faire de la kin\u00e9sith\u00e9rapie, mais cela ne m'a pas beaucoup aid\u00e9. Par la suite, nous avons constat\u00e9 qu'il serait pr\u00e9f\u00e9rable d'allonger mes tendons d'Achille. J'ai \u00e9t\u00e9 op\u00e9r\u00e9 et j'ai \u00e9t\u00e9 pl\u00e2tr\u00e9 pendant deux mois pour chaque jambe, l'une apr\u00e8s l'autre. Pendant ma convalescence et la reprise de la kin\u00e9sith\u00e9rapie, mon kin\u00e9sith\u00e9rapeute a remarqu\u00e9 que je ne reprenais pas de force. Il m'a envoy\u00e9 chez un neurologue pour des examens compl\u00e9mentaires.<\/p>\n
AVEZ-VOUS D'AUTRES MEMBRES DE LA FAMILLE ATTEINTS DE LA LGMD : non<\/p>\n
QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD :
\nJe pense que la plus grande difficult\u00e9 \u00e0 vivre avec la LGMD est que les gens ont du mal \u00e0 la comprendre. Il n'est pas facile de d\u00e9crire la LGMD \u00e0 quelqu'un. Beaucoup de gens pensent que j'exag\u00e8re ou m\u00eame que je mens \u00e0 propos de cette maladie. Je suis toujours mobile, donc ils ne pensent pas que j'ai des difficult\u00e9s. J'aimerais que les gens soient plus ouverts \u00e0 l'apprentissage de ces maladies et qu'ils comprennent \u00e0 quel point elles sont difficiles.<\/p>\n
QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION :
\nMa plus grande r\u00e9ussite a \u00e9t\u00e9 d'obtenir mon dipl\u00f4me universitaire. Je jonglais entre le travail scolaire et les tests m\u00e9dicaux que je devais faire. C'\u00e9tait parfois difficile \u00e0 suivre, mais j'ai r\u00e9ussi \u00e0 m'en sortir et \u00e0 m'impliquer dans des organisations scolaires. J'ai rejoint Gamma Sigma Sigma (une sororit\u00e9 de service) et j'ai \u00e9t\u00e9 pr\u00e9sidente du conseil des \u00e9v\u00e9nements du gouvernement des \u00e9tudiants unis. J'ai eu l'occasion d'organiser des \u00e9v\u00e9nements tels qu'un conf\u00e9rencier prestigieux et un concert. La gaine ne m'a pas emp\u00each\u00e9e de poursuivre ce que je voulais vraiment. Traverser cette sc\u00e8ne avec ce dipl\u00f4me en main est un sentiment que je n'oublierai jamais.<\/p>\n
COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI :
\nLe LGMD m'a appris \u00e0 mieux comprendre les autres et leur histoire. Tout le monde a une histoire que nous ne connaissons pas. J'ai \u00e9galement beaucoup appris sur moi-m\u00eame. J'ai appris ce que je pouvais accomplir malgr\u00e9 des revers mineurs. Le sens de l'humour est indispensable pour surmonter les moments difficiles. J'ai appris \u00e0 \u00eatre patiente et \u00e0 accepter le fait que tout le monde a besoin d'un coup de main !<\/p>\n
QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD :
\nJe veux que les gens sachent que ce n'est pas parce qu'on ne peut pas le voir qu'il n'est pas l\u00e0 ! Essayez d'\u00eatre patient et compr\u00e9hensif envers les personnes qui vous expliquent cette maladie. Il est tout aussi difficile pour nous d'expliquer que pour vous de comprendre.<\/p>\n
SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS VOUDRIEZ FAIRE :
\nLa premi\u00e8re chose que je voudrais faire, c'est voyager sans les difficult\u00e9s que cela implique. Je voudrais aller \u00e0 la plage et nager sans avoir besoin d'aide. Ce serait bien de pouvoir aller o\u00f9 je veux sans avoir \u00e0 planifier chaque petit d\u00e9tail \u00e0 l'avance ; il suffit de ne pas s'inqui\u00e9ter et de s'amuser !<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"
03\/01\/2015: NAME: Julianna AGE: 24 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":304,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,16],"class_list":["post-418","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-united-states"],"acf":[],"yoast_head":"\n
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<\/a>