Ebook63 pages31 minutes
Fast Facts: Le déficit en pyruvate kinase pour les patients et les accompagnants: Une maladie génétique rare qui affecte les globules rouges Informations + Prise de contrôle = Meilleur résultat
By R. Grace
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Le déficit en pyruvate kinase est une maladie génétique rare qui cause la destruction des globules rouges. Malgré une compréhension grandissante de la maladie, elle reste inconnue de nombreux professionnels de santé et l'information disponible pour les patients est limitée. Ce livret superbement illustré est conçu pour aider les patients à se doter des meilleures informations sur leur maladie afin d'améliorer les conversations qu'ils ont avec les médecins et les infirmiers à son sujet. Il fournit des explications simples mais détaillées sur : • le rôle des globules rouges et ce qui ne va pas dans le déficit en pyruvate kinase • la manière dont la maladie est transmise • la manière dont la maladie affecte les patients • les tests sanguins et la signification des résultats • les traitements de soutien, y compris les transfusions sanguines et l'ablation de la rate • la manière dont les complications comme la surcharge en fer et la jaunisse sont gérées. Avec les 'FastTests' (petits tests) pour savoir comment les patients comprennent leur maladie et des espaces pour noter leurs remarques, cette ressource concise et facile à lire aidera les patients à s'organiser afin qu'ils soient mieux équipés pour poser les bonnes questions et avoir des discussions plus sérieuses concernant leur traitement. Enfin, il les aidera à prendre les meilleures décisions concernant leur prise en charge.
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Fast Facts - R. Grace
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