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La vue au Présent: vivre avec la maladie de Stargardt: Guide pratique et humain pour comprendre la maladie, accompagner un proche et préserver l'auton
Paperback
Men's HealthWomen's HealthGeneral Alternative Health
Publisher: Independently Published
Published: Jun 10 2026
Pages: 138
Weight: 0.39
Height: 0.35 Width: 6.00 Depth: 9.00
Language: French
La maladie de Stargardt ne touche pas seulement la vision. Elle transforme le quotidien, les repères, l'autonomie, la relation aux autres et parfois l'image que l'on a de soi.
Quand le diagnostic arrive, beaucoup de questions surgissent.
Que se passe-t-il dans l'oeil ?
Quels examens faut-il comprendre ?
Comment continuer à lire, travailler, se déplacer, cuisiner, utiliser son téléphone ou gérer ses démarches ?
Comment aider un proche sans le surprotéger ?
Comment parler de la maladie en famille ?
Quelles aides existent en France ?
Par où commencer avec la MDPH, la RQTH, la PCH, l'AAH ou la CMI ?
Ce livre a été écrit pour répondre à ces questions avec des mots simples, sans jargon inutile, sans dramatiser et sans minimiser.
À la fois guide pratique et livre d'accompagnement, La vue au Présent s'adresse aux personnes atteintes de la maladie de Stargardt, à leurs proches, aux aidants et à toutes les familles qui cherchent des repères concrets.
Vous y trouverez:
- une explication accessible de la maladie de Stargardt;
- un chapitre consacré aux examens médicaux: fond d'oeil, OCT, autofluorescence, champ visuel, ERG, test génétique;
- une approche adaptée selon l'âge: enfant, adolescent, adulte actif, parent, personne plus âgée;
- des scènes concrètes du quotidien: lire une ordonnance, reconnaître un visage, faire les courses, utiliser un terminal de paiement, lire un menu, prendre les transports;
- une boîte à outils pour l'autonomie: smartphone, ordinateur, liseuse, lecture vocale, scanner de documents, contrastes, éclairage, rangement, cuisine, déplacements;
- un chapitre pour les proches: aider sans infantiliser, proposer sans imposer, écouter sans minimiser;
- une approche psychologique prudente: deuil de l'ancienne autonomie, honte, colère, peur d'être un poids, besoin de soutien;
- un chapitre opérationnel sur les ressources françaises: médecin traitant, ophtalmologiste, orthoptiste, opticien basse vision, ergothérapeute, instructeur en locomotion, MDPH, RQTH, PCH, AAH, CMI, Agefiph, associations;
- des annexes pratiques: modèle de courrier MDPH, demande d'aménagement de poste, questions à poser à l'ophtalmologiste, checklist maison, checklist smartphone, fiche pour aider sans infantiliser.
Ce livre ne remplace pas un avis médical. Il accompagne, explique et donne des repères pour mieux vivre avec la maladie au quotidien.
La vue au Présent est un livre pour comprendre, s'adapter, préserver la dignité et continuer à avancer.
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