{"id":5708,"date":"2022-04-05T15:44:07","date_gmt":"2022-04-05T15:44:07","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5708"},"modified":"2024-02-09T14:23:55","modified_gmt":"2024-02-09T14:23:55","slug":"individual-with-lgmd-yasemin","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2022\/04\/05\/individual-with-lgmd-yasemin\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Yasemin"},"content":{"rendered":"

\n

\"\"<\/p>\n

LGMD : \"Spotlight Interview\" (entretien)<\/strong><\/p>\n

Nom<\/strong>: Yasemin
<\/strong><\/p>\n

L'\u00e2ge<\/strong>: 4 ans<\/p>\n

Pays<\/strong>: Pays-Bas<\/p>\n

LGMD Sous-type<\/strong>: LGMD 2A\/R1 li\u00e9 \u00e0 la calpa\u00efne 3<\/p>\n<\/p>\n

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

Notre fille a \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 2 ans.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers SYMPT\u00d4MES ?<\/strong><\/p>\n

Elle ne pr\u00e9sente encore aucun sympt\u00f4me. Comme elle grandit tr\u00e8s lentement, on a effectu\u00e9 des tests \u00e0 l'h\u00f4pital et on a d\u00e9couvert qu'elle avait un taux de CK tr\u00e8s \u00e9lev\u00e9. Apr\u00e8s d'autres tests, ils ont d\u00e9couvert qu'elle \u00e9tait atteinte de LGMD 2A\/R1.<\/p>\n

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

Personne d'autre dans notre famille n'est atteint de LGMD.<\/p>\n

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

Nous (les parents) esp\u00e9rons que notre fille grandira avec un esprit positif. Et qu'un rem\u00e8de sera d\u00e9couvert avant l'apparition des sympt\u00f4mes.<\/p>\n

Quelle est votre plus grande R\u00c9ALISATION ?<\/strong><\/p>\n

En tant que parents, nous esp\u00e9rons lui donner le sentiment qu'elle peut \u00eatre tout ce qu'elle veut. N'importe quoi, avec quelques limites.<\/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

Elle n'a que 4 ans. Nous esp\u00e9rons qu'elle deviendra une personne au caract\u00e8re bien tremp\u00e9. Nous esp\u00e9rons pouvoir faire tout ce qui est en notre pouvoir pour lui faciliter la vie pratique.<\/p>\n

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

Nous voulons que le monde sache que cette maladie existe. Et qu'une personne diagnostiqu\u00e9e a des besoins et peut facilement participer \u00e0 la vie de la soci\u00e9t\u00e9.<\/p>\n

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

En tant que parents, nous nous r\u00e9jouissons de voir Yasemin grandir en sachant qu'elle peut faire face \u00e0 tout, m\u00eame si maman et papa disparaissent un jour.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5709,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"image","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5708","post","type-post","status-publish","format-image","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","post_format-post-format-image"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Yasemin - 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\" 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