{"id":2736,"date":"2025-09-01T16:22:18","date_gmt":"2025-09-01T14:22:18","guid":{"rendered":"https:\/\/okuvision.de\/news\/retinitis-pigmentosa-mentale-gesundheit\/"},"modified":"2026-05-05T16:48:19","modified_gmt":"2026-05-05T14:48:19","slug":"retinitis-pigmentosa-mentale-gesundheit","status":"publish","type":"post","link":"https:\/\/okuvision.de\/fr\/news\/retinitis-pigmentosa-mentale-gesundheit\/","title":{"rendered":"PR et sant\u00e9 mentale"},"content":{"rendered":"

[vc_row row_height_percent=\u00a0\u00bb0″ override_padding=\u00a0\u00bbyes\u00a0\u00bb h_padding=\u00a0\u00bb0″ top_padding=\u00a0\u00bb0″ bottom_padding=\u00a0\u00bb0″ back_color=\u00a0\u00bbcolor-206913″ overlay_alpha=\u00a0\u00bb50″ gutter_size=\u00a0\u00bb3″ column_width_percent=\u00a0\u00bb100″ shift_y=\u00a0\u00bb0″ z_index=\u00a0\u00bb0″ content_parallax=\u00a0\u00bb0″ uncode_shortcode_id=\u00a0\u00bb100151″ back_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/1″]\n

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\n \n Lesedauer ca. 3 Min. <\/span>\n \n 1. septembre 2025 <\/span>\n <\/div>\n \n

\n R\u00e9tinite pigmentaire et sant\u00e9 mentale : ce qui aide <\/h1>\n \n
\n \n <\/div>\n \n
\n Quotidien et t\u00e9moignages<\/span>\n <\/div>\n \n <\/div>\n \n \n
\n \"RP <\/div>\n <\/div>\n \n <\/div>\n \n<\/div>\n\n\n[\/vc_column][\/vc_row][vc_row row_height_percent=\u00a0\u00bb0″ override_padding=\u00a0\u00bbyes\u00a0\u00bb h_padding=\u00a0\u00bb2″ top_padding=\u00a0\u00bb3″ bottom_padding=\u00a0\u00bb3″ overlay_alpha=\u00a0\u00bb50″ gutter_size=\u00a0\u00bb3″ column_width_percent=\u00a0\u00bb100″ shift_y=\u00a0\u00bb0″ z_index=\u00a0\u00bb0″ content_parallax=\u00a0\u00bb0″ uncode_shortcode_id=\u00a0\u00bb959669″ row_name=\u00a0\u00bbEinleitung\u00a0\u00bb][vc_column column_width_percent=\u00a0\u00bb70″ gutter_size=\u00a0\u00bb3″ overlay_alpha=\u00a0\u00bb50″ shift_x=\u00a0\u00bb0″ shift_y=\u00a0\u00bb0″ shift_y_down=\u00a0\u00bb0″ z_index=\u00a0\u00bb0″ medium_width=\u00a0\u00bb0″ mobile_width=\u00a0\u00bb0″ width=\u00a0\u00bb1\/1″ uncode_shortcode_id=\u00a0\u00bb705359″][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb714121″]Pourquoi la PR affecte le psychisme[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb165856″]La r\u00e9tinite pigmentaire (PR) ne touche pas \u00ab seulement \u00bb les yeux, mais tous les domaines de la vie \u2013 du travail \u00e0 la mobilit\u00e9 en passant par les relations. Les \u00e9tudes d\u00e9crivent un impact psychosocial important, notamment parce que la PR d\u00e9bute g\u00e9n\u00e9ralement t\u00f4t, progresse lentement et n’est pas gu\u00e9rissable. C’est pourquoi les strat\u00e9gies d’adaptation psychosociale, l’information et le maintien de l’autonomie font partie int\u00e9grante de la prise en charge d\u00e8s le d\u00e9part.1<\/sup> <\/p>\n

Dans une enqu\u00eate, 92 % des personnes concern\u00e9es ont d\u00e9clar\u00e9 que la PR influen\u00e7ait leur sant\u00e9 mentale.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb918241″]Sentiments et sympt\u00f4mes fr\u00e9quents \u2013 et comment les comprendre[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb104927″]Au d\u00e9but dominent souvent le choc, l’anxi\u00e9t\u00e9, l’incertitude. Plus tard, le r\u00e9tr\u00e9cissement du champ visuel peut limiter sensiblement le quotidien : des activit\u00e9s comme lire, se rep\u00e9rer, faire du sport ou conduire deviennent plus difficiles \u2013 ce qui corr\u00e8le dans les \u00e9tudes avec une qualit\u00e9 de vie moindre, davantage d’anxi\u00e9t\u00e9 et d’humeur d\u00e9pressive.1<\/sup> <\/p>\n

Ind\u00e9pendamment de la PR, les \u00e9tudes sur la d\u00e9ficience visuelle montrent \u00e9galement : moins de fonction visuelle s’accompagne souvent de davantage de sympt\u00f4mes d\u00e9pressifs et de sentiments d’anxi\u00e9t\u00e9.2<\/sup><\/p>\n

Important : les sentiments sont compr\u00e9hensibles \u2013 et modifiables. Notez vos principaux obstacles (par ex. \u00e9blouissement, p\u00e9nombre, orientation). C’est pr\u00e9cis\u00e9ment l\u00e0 qu’intervient l’aide : technologie, entra\u00eenement, environnement.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb202388″]Syndrome de Charles-Bonnet : inqui\u00e9tant, mais explicable[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb754470″]En cas de perte visuelle prononc\u00e9e, des hallucinations visuelles peuvent survenir (syndrome de Charles-Bonnet) \u2013 jusqu’\u00e0 1 adulte sur 3 atteint de PR avanc\u00e9e en fait \u00e9tat. Cela n’a rien \u00e0 voir avec le fait d’\u00ab \u00eatre fou \u00bb, mais avec une privation sensorielle. Abordez-le ouvertement en consultation \u2013 la honte emp\u00eache inutilement d’obtenir de l’aide.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb182641″]Ce que recommandent les \u00e9tudes : information, structure, soutien[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb183198″]Information et conseil. Les \u00e9quipes m\u00e9dicales doivent aborder activement les aspects psychologiques, expliquer les offres de soutien et \u2013 si n\u00e9cessaire \u2013 orienter vers le m\u00e9decin traitant ou un service de conseil. Des contr\u00f4les r\u00e9guliers (en r\u00e8gle g\u00e9n\u00e9rale tous les 1 \u00e0 2 ans) rendent l’\u00e9volution pr\u00e9visible et apportent de la s\u00e9curit\u00e9.1<\/sup> <\/p>\n

Soutien par les pairs. Le contact avec des groupes d’entraide am\u00e9liore l’adaptation, la fonction et l’autonomie \u2013 et soulage l’entourage.1<\/sup> <\/p>\n

R\u00e9\u00e9ducation et basse vision. Agrandissement, filtres de contraste, \u00e9clairage, orientation et mobilit\u00e9, lecteur d’\u00e9cran \u2013 con\u00e7us comme une r\u00e9\u00e9ducation structur\u00e9e, non comme des \u00ab trouvailles fortuites \u00bb. Cela augmente la marge de man\u0153uvre et r\u00e9duit le stress.1<\/sup> <\/p>\n

Impliquer la famille. Les proches apprennent \u00e0 reconna\u00eetre les signes avant-coureurs de d\u00e9pression et \u00e0 r\u00e9agir de mani\u00e8re constructive.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb135683″]Perspective par la pr\u00e9servation de la fonction \u2013 bref aper\u00e7u de la SET (OkuStim\u00ae)[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb587702″]De nombreuses contraintes apparaissent lorsque la fonction se perd. C’est pourquoi la pr\u00e9servation de la fonction est un objectif central : les \u00e9tudes sur la stimulation \u00e9lectrique transcorn\u00e9enne (SET) sugg\u00e8rent que la perte du champ visuel dans la PR peut \u00eatre ralentie.3<\/sup> <\/p>\n

L’\u00e9quipe conclut : si la perte annuelle est divis\u00e9e par deux, la \u00ab demi-vie \u00bb du champ visuel utilisable est th\u00e9oriquement doubl\u00e9e \u2013 avec un potentiel d’am\u00e9lioration durable de la qualit\u00e9 de vie.3<\/sup><\/p>\n

Important : la SET ne gu\u00e9rit pas la PR. L’examen d’\u00e9ligibilit\u00e9 (objectifs, dose, contr\u00f4les de suivi) d\u00e9termine si la SET est pertinente pour vous. D\u00e9tails sur notre page SET.[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb227724″]Bo\u00eete \u00e0 outils pour le quotidien : 10 strat\u00e9gies concr\u00e8tes[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb632037″]<\/p>\n

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  1. \u00c9tablir des routines<\/b> (horaires fixes de contr\u00f4le et d’entra\u00eenement). La r\u00e9p\u00e9tabilit\u00e9 r\u00e9duit le stress1<\/sup> <\/li>\n
  2. Optimiser lumi\u00e8re et contraste<\/b> (\u00e0 domicile\/au travail)1<\/sup><\/li>\n
  3. Tester filtres de contraste\/agrandissement\/lecteur d’\u00e9cran<\/b> \u2013 faire adapter professionnellement1<\/sup><\/li>\n
  4. S’entra\u00eener \u00e0 l’orientation et mobilit\u00e9<\/b> (canne blanche, entra\u00eenement aux d\u00e9placements)<\/li>\n
  5. Gestion de l’\u00e9nergie<\/b> : planifier les rendez-vous, prendre les pauses au s\u00e9rieux1<\/sup><\/li>\n
  6. Communiquer ouvertement<\/b> (\u00e9quipe, famille) : \u00ab De quoi ai-je concr\u00e8tement besoin ? \u00bb<\/li>\n
  7. Utiliser le soutien par les pairs<\/b> : l’\u00e9change soulage et fournit des astuces pratiques1<\/sup><\/li>\n
  8. Activit\u00e9 physique<\/b> (adapt\u00e9e) : effet stabilisateur sur l’humeur \u2013 et renforce le sentiment d’efficacit\u00e9 personnelle1<\/sup><\/li>\n
  9. Int\u00e9grer les aides num\u00e9riques<\/b> (applications, synth\u00e8se vocale, navigation) dans l’\u00e9quipement standard1<\/sup><\/li>\n
  10. Examiner les options th\u00e9rapeutiques<\/b> avec l’\u00e9quipe (par ex. SET) \u2013 la pr\u00e9servation de la fonction soutient \u00e9galement le psychisme3<\/sup><\/li>\n<\/ol>\n

    [\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb162430″]Pour les proches : bien aider, sans surcharger[\/vc_custom_heading][uncode_list icon=\u00a0\u00bbfa fa-minus\u00a0\u00bb icon_color=\u00a0\u00bbcolor-233806″ uncode_shortcode_id=\u00a0\u00bb182687″ icon_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb]<\/p>\n

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    • \u00c9couter, ne pas corriger.<\/b> D’abord demander, ensuite<\/b> aider.1<\/sup><\/li>\n
    • R\u00e8gles communes<\/b> pour la lumi\u00e8re\/l’ordre\/les d\u00e9placements \u2013 la s\u00e9curit\u00e9 apporte le calme1<\/sup><\/li>\n
    • Conna\u00eetre les signes de d\u00e9pression<\/b> (repli, manque d’\u00e9lan, troubles du sommeil) et en parler<\/b> \u2013 organiser de l’aide si n\u00e9cessaire1<\/sup><\/li>\n<\/ul>\n

      [\/uncode_list][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb879273″]Quand l’aide professionnelle est importante[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb103701″]Consultez un soutien m\u00e9dical\/psychologique si[\/vc_column_text][uncode_list icon=\u00a0\u00bbfa fa-minus\u00a0\u00bb icon_color=\u00a0\u00bbcolor-233806″ uncode_shortcode_id=\u00a0\u00bb131968″ icon_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb]<\/p>\n

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      • l’anxi\u00e9t\u00e9\/le chagrin sont persistants<\/b>,<\/li>\n
      • le quotidien\/le travail ne fonctionnent plus<\/b>,<\/li>\n
      • les hallucinations<\/b> vous inqui\u00e8tent (syndrome de Charles-Bonnet).1\u20132<\/sup><\/li>\n<\/ul>\n

        [\/uncode_list][vc_column_text uncode_shortcode_id=\u00a0\u00bb756319″]Votre ophtalmologiste doit activement prendre en compte les aspects psychologiques et orienter si n\u00e9cessaire.1<\/sup>[\/vc_column_text][vc_row_inner][vc_column_inner width=\u00a0\u00bb1\/1″][vc_separator sep_color=\u00a0\u00bbcolor-183551″ uncode_shortcode_id=\u00a0\u00bb577203″ sep_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb][vc_custom_heading heading_semantic=\u00a0\u00bbh6″ text_size=\u00a0\u00bbh4″ uncode_shortcode_id=\u00a0\u00bb813554″]R\u00e9f\u00e9rences[\/vc_custom_heading][vc_column_text text_lead=\u00a0\u00bbsmall\u00a0\u00bb uncode_shortcode_id=\u00a0\u00bb161361″]1 Cross N et al. Retinitis Pigmentosa: Burden of Disease and Current Unmet Needs. Clin Ophthalmol. 2022;16:1993\u20132010. <\/p>\n

        2 Okuvision GmbH. Livre blanc pour professionnels de sant\u00e9 : Transcorneal Electrical Stimulation Therapy. Mai 2024. (Preuve de la corr\u00e9lation basse vision \u2194 d\u00e9pression\/anxi\u00e9t\u00e9, r\u00e9f\u00e9rences bibliographiques incluses.) <\/p>\n

        3 Stett A et al. Transcorneal Electrical Stimulation Dose-Dependently Slows the Visual Field Loss in RP. TVST.<\/i> 2023;12:29. (Relation dose-effet ; contribution potentielle \u00e0 la pr\u00e9servation de la fonction et \u00e0 la qualit\u00e9 de vie.)[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

        Pourquoi la PR p\u00e8se \u2013 et ce qui aide de mani\u00e8re av\u00e9r\u00e9e : information, soutien, r\u00e9\u00e9ducation et pr\u00e9servation de la fonction. Avec des strat\u00e9gies concr\u00e8tes pour le quotidien. <\/p>\n","protected":false},"author":10,"featured_media":878,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[191],"tags":[],"class_list":["post-2736","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-quotidien-temoignages"],"yoast_head":"\nPR et sant\u00e9 mentale : ce qui aide vraiment<\/title>\n<meta name=\"description\" content=\"La r\u00e9tinite pigmentaire affecte \u00e9galement le psychisme. La recherche montre ce qui aide : information, soutien, r\u00e9\u00e9ducation \u2013 et pr\u00e9servation de la fonction (par ex. SET). 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