{"id":1594,"date":"2017-09-30T10:40:17","date_gmt":"2017-09-30T15:40:17","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1594"},"modified":"2017-09-30T10:40:17","modified_gmt":"2017-09-30T15:40:17","slug":"kourtney","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2017\/09\/30\/kourtney\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Kourtney"},"content":{"rendered":"

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n

Nom<\/strong>: Kourtney\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 L'\u00e2ge<\/strong>: 23 ans \"\"<\/a><\/p>\n

Pays<\/strong>: \u00c9TATS-UNIS<\/p>\n

LGMD Sous-type<\/strong>: LGMD2B \/ Myopathie de Miyoshi<\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 14 ans.<\/p>\n

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

Le tout premier sympt\u00f4me que j'ai remarqu\u00e9, c'est que les muscles de mes mollets ont commenc\u00e9 \u00e0 gonfler de fa\u00e7on incontr\u00f4lable apr\u00e8s un grand spectacle de danse. Au bout d'un moment, je ne voyais plus mes chevilles et nous avons commenc\u00e9 \u00e0 nous inqui\u00e9ter. Le m\u00e9decin nous a demand\u00e9 de mesurer mes mollets tous les jours et de tenir un journal. Ils devenaient de plus en plus gros. Les m\u00e9decins ont pens\u00e9 que cela pouvait \u00eatre d\u00fb \u00e0 un caillot de sang, alors ils ont fait beaucoup d'\u00e9chographies de mes jambes, de mon c\u0153ur et de mon estomac pour voir s'il y avait quelque chose d'anormal. Ils n'ont rien trouv\u00e9 d'anormal. Ils ont donc d\u00e9cid\u00e9 de faire une biopsie musculaire, et c'est ainsi qu'ils m'ont diagnostiqu\u00e9e.<\/p>\n

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

Oui. Ma s\u0153ur a\u00een\u00e9e, Stephanie Garrett, est atteinte du m\u00eame type de cancer que moi. Elle a \u00e9t\u00e9 diagnostiqu\u00e9e quelques mois avant moi. Elle semble avoir plus de probl\u00e8mes dans les bras (2B) et moi plus de probl\u00e8mes dans les jambes (MM).<\/p>\n

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

Je pense que le plus grand d\u00e9fi de la vie avec la DM est de faire face \u00e0 l'id\u00e9e que l'on ne peut pas faire quelque chose que l'on \u00e9tait capable de faire auparavant. Il y a beaucoup de choses qui sont difficiles \u00e0 faire physiquement, comme danser, grimper, marcher, etc. Ce qui est difficile, c'est de s'en accommoder. Je pense que la DM est plus un d\u00e9fi \u00e9motionnel qu'un d\u00e9fi physique. Mais il faut rester positif et penser \u00e0 toutes les choses extraordinaires que l'on peut encore faire.<\/p>\n

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

C'est une question difficile parce que j'ai l'impression d'avoir accompli beaucoup de choses dans ma vie. J'ai obtenu mon dipl\u00f4me au lyc\u00e9e, puis \u00e0 l'universit\u00e9, j'ai deux emplois que j'adore, je me suis mari\u00e9e avec mon amoureux du lyc\u00e9e, mais le plus important, c'est que je suis devenue maman. Depuis que je suis toute petite, j'ai toujours eu h\u00e2te de devenir maman. Lorsqu'on m'a diagnostiqu\u00e9 un LGMD, je ne savais pas si c'\u00e9tait possible ou non. Avec l'\u00e2ge et l'affaiblissement de mon corps, j'ai remis les choses en question. J'ai eu tellement peur du mal que je pouvais faire \u00e0 ma famille \u00e0 cause de ma situation physique. Mais mes amis et ma famille n'ont fait que me soutenir, m'aimer et m'aider. Ma plus grande r\u00e9ussite est ma petite fille. J'ai trouv\u00e9 tant de moyens de faire en sorte que tout se passe bien pour qu'elle soit heureuse, en bonne sant\u00e9 et en s\u00e9curit\u00e9. Je sais que l'avenir sera difficile avec des enfants, mais cela en vaudra la peine.<\/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

M\u00eame si la LGMD m'a d\u00e9finitivement affaiblie physiquement, elle m'a surtout rendue plus forte \u00e9motionnellement et spirituellement. Je ne souhaite \u00e0 personne d'\u00eatre atteint de cette maladie, mais je pense qu'elle a \u00e9t\u00e9 une b\u00e9n\u00e9diction dans ma vie. Je suis reconnaissante d'en \u00eatre atteinte, de pouvoir enseigner aux autres ce qu'est cette maladie et d'\u00eatre un exemple pour les autres.<\/p>\n

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

Je veux que le monde sache que nous sommes des personnes normales, que nous avons des sentiments et qu'il y a des choses qu'il faut faire attention de ne pas faire ou dire. S'il vous pla\u00eet, ne me fixez pas, ne me dites pas que je marche bizarrement, ne riez pas si je tombe, et ne me jugez pas en fonction de ce que je peux ou ne peux pas faire. Ne faites pas de blagues sur les handicaps. Ne supposez pas que je peux faire quelque chose. Au contraire, aidez-moi, relevez-moi et encouragez-moi. Faites en sorte que je me sente aim\u00e9 et important. Et s'il vous pla\u00eet, aimez-moi de la m\u00eame mani\u00e8re que si j'allais bien physiquement.<\/p>\n

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

Si je pouvais \u00eatre gu\u00e9rie demain, la premi\u00e8re chose que je ferais serait de danser. La danse \u00e9tait mon c\u0153ur, mon \u00e2me et ma passion, et elle me manque plus que tout.<\/p>\n

 <\/p>\n

* 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<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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