{"id":2629,"date":"2025-12-11T10:07:25","date_gmt":"2025-12-11T09:07:25","guid":{"rendered":"https:\/\/okuvision.de\/news\/erfahrungen-mit-rp-okustim-anja-renner\/"},"modified":"2026-05-21T09:12:02","modified_gmt":"2026-05-21T07:12:02","slug":"erfahrungen-mit-rp-okustim-anja-renner","status":"publish","type":"post","link":"https:\/\/okuvision.de\/fr\/news\/erfahrungen-mit-rp-okustim-anja-renner\/","title":{"rendered":"T\u00e9moignage \u2013 Anja Renner"},"content":{"rendered":"

[vc_row unlock_row_content=\u00a0\u00bbyes\u00a0\u00bb 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\u00bb126459″ back_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/1″]\n

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\n \n 11. d\u00e9cembre 2025 <\/span>\n <\/div>\n \n

\n \u00ab Je refuse d\u2019abandonner \u00bb \u2013 exp\u00e9riences avec la r\u00e9tinite pigmentaire (RP) & OkuStim\u00ae <\/h1>\n \n
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La paratriathl\u00e8te Anja Renner parle ouvertement de sa vie avec la RP et de ses exp\u00e9riences avec la th\u00e9rapie OkuStim\u00ae \u2013 sinc\u00e8re, proche du quotidien, encourageant.<\/p>\n <\/div>\n \n <\/div>\n \n

\n Portraits d\u2019utilisateurs<\/span>\n <\/div>\n \n <\/div>\n \n \n
\n \"Paratriathletin <\/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\u00bb154820″][vc_column width=\u00a0\u00bb1\/1″][vc_custom_heading text_font=\u00a0\u00bbfont-714446″ text_size=\u00a0\u00bbfontsize-914237″ text_weight=\u00a0\u00bb300″ uncode_shortcode_id=\u00a0\u00bb621957″]Pourquoi les t\u00e9moignages sont importants \u2013 et ce qu\u2019ils ne peuvent pas faire[\/vc_custom_heading][vc_row_inner][vc_column_inner column_width_percent=\u00a0\u00bb100″ 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_visibility=\u00a0\u00bbyes\u00a0\u00bb medium_width=\u00a0\u00bb0″ mobile_visibility=\u00a0\u00bbyes\u00a0\u00bb mobile_width=\u00a0\u00bb0″ width=\u00a0\u00bb1\/3″ uncode_shortcode_id=\u00a0\u00bb131905″][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb2\/3″][vc_column_text text_lead=\u00a0\u00bbyes\u00a0\u00bb uncode_shortcode_id=\u00a0\u00bb141257″]Lorsqu\u2019on re\u00e7oit le diagnostic de r\u00e9tinite pigmentaire (RP) ou d\u2019une autre maladie h\u00e9r\u00e9ditaire de la r\u00e9tine, on cherche des r\u00e9ponses \u2013 mais souvent surtout des personnes qui ont d\u00e9j\u00e0 parcouru une partie de ce chemin. Les t\u00e9moignages donnent du courage, apportent des id\u00e9es tr\u00e8s concr\u00e8tes pour le quotidien et aident \u00e0 situer les d\u00e9cisions non seulement \u00ab sur le papier \u00bb, mais dans la vraie vie.
\nTout aussi importante est la limite : chaque histoire est un cas particulier. Ce qui aide Anja ou Moritz ne convient pas forc\u00e9ment \u00e0 tout le monde. Les d\u00e9marches m\u00e9dicales rel\u00e8vent d\u2019un avis m\u00e9dical \u2013 les t\u00e9moignages ne remplacent ni le diagnostic ni les recommandations de prise en charge.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/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″ 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\u00bb206492″ back_color_type=\u00a0\u00bbuncode-palette\u00a0\u00bb][vc_column column_width_percent=\u00a0\u00bb100″ 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\u00bb867860″][vc_custom_heading text_font=\u00a0\u00bbfont-714446″ text_size=\u00a0\u00bbfontsize-914237″ text_weight=\u00a0\u00bb300″ uncode_shortcode_id=\u00a0\u00bb168111″]Anja Renner \u2013 syndrome d\u2019Usher,
\nparatriathlon et endurance au long cours1<\/sup>[\/vc_custom_heading][vc_row_inner][vc_column_inner column_width_percent=\u00a0\u00bb100″ 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_visibility=\u00a0\u00bbyes\u00a0\u00bb medium_width=\u00a0\u00bb0″ mobile_visibility=\u00a0\u00bbyes\u00a0\u00bb mobile_width=\u00a0\u00bb0″ width=\u00a0\u00bb1\/3″ uncode_shortcode_id=\u00a0\u00bb287397″][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb2\/3″][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb127342″]Du choc \u00e0 l\u2019attitude : \u00ab Ne pas abandonner \u00bb[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb210109″]Anja Renner est malentendante de naissance. \u00c0 25 ans, le diagnostic de syndrome d\u2019Usher tombe \u2013 une maladie qui affecte l\u2019audition et la vision. La vision diminue lentement en raison de la r\u00e9tinite pigmentaire. Des ann\u00e9es plus tard, elle d\u00e9crit : \u00ab Aujourd\u2019hui, je ne vois plus qu\u2019environ 10 % de ce que la plupart des gens voient. \u00bb<\/i> Plut\u00f4t que de se r\u00e9signer, elle formule son propre contre-programme : ne pas abandonner, s\u2019adapter pas \u00e0 pas, rester mentalement forte.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb277457″]Sport de haut niveau avec moins de 10 % de vision r\u00e9siduelle[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb206645″]Anja trouve dans le paratriathlon une sc\u00e8ne pour cette attitude. Avec un guide, elle roule en tandem, s\u2019entra\u00eene avec concentration et planifie ses d\u00e9parts avec minutie. En la suivant, on le ressent : il s\u2019agit d\u2019autod\u00e9termination \u2013 pas de minimiser les difficult\u00e9s. L\u2019entra\u00eenement est sa boussole ; elle parle ouvertement des revers et du sentiment de devoir se r\u00e9inventer sans cesse.1<\/sup> <\/p>\n

\u00ab Le diagnostic a \u00e9t\u00e9 un choc qui m\u2019a coup\u00e9 les jambes. Mais j\u2019ai refus\u00e9 d\u2019abandonner. \u00bb \u2013 Anja Renner1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb132613″]Ce qu\u2019Anja transmet aux autres[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb143047″]<\/p>\n

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  • Laisser place \u00e0 l\u2019acceptation, rester active. La maladie peut \u00eatre nomm\u00e9e \u2013 et pourtant, chaque jour offre une marge de man\u0153uvre.1<\/sup> <\/li>\n
  • Embarquer l\u2019entourage. Guides, famille, amis \u2013 ceux qui soutiennent rendent possibles de nouveaux chemins.1<\/sup> <\/li>\n
  • Sa propre d\u00e9finition de la r\u00e9ussite. Parfois, la \u00ab r\u00e9ussite \u00bb, c\u2019est une bonne journ\u00e9e d\u2019entra\u00eenement ; parfois, un plan B intelligent.1<\/sup> <\/li>\n<\/ul>\n

    [\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_custom_heading text_font=\u00a0\u00bbfont-714446″ text_size=\u00a0\u00bbfontsize-914237″ text_weight=\u00a0\u00bb300″ uncode_shortcode_id=\u00a0\u00bb171238″]Ce que beaucoup de personnes concern\u00e9es vivent de fa\u00e7on similaire \u2013
    \ndes sch\u00e9mas communs[\/vc_custom_heading][vc_row_inner][vc_column_inner column_width_percent=\u00a0\u00bb100″ 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_visibility=\u00a0\u00bbyes\u00a0\u00bb medium_width=\u00a0\u00bb0″ mobile_visibility=\u00a0\u00bbyes\u00a0\u00bb mobile_width=\u00a0\u00bb0″ width=\u00a0\u00bb1\/3″ uncode_shortcode_id=\u00a0\u00bb287397″][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb2\/3″][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb290076″]\u00c9motions & \u00e9tat d\u2019esprit : entre tristesse, col\u00e8re et confiance[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb152208″]Le t\u00e9moignage commence d\u2019abord par une frayeur : le moment o\u00f9 l\u2019on comprend que quelque chose de fondamental dans la vision n\u2019est plus comme avant. Du choc na\u00eet une attitude : \u00ab Je refuse d\u2019abandonner \u00bb (Anja). Derri\u00e8re cela, il n\u2019y a pas un \u00ab Tout va bien \u00bb, mais la d\u00e9cision de continuer malgr\u00e9 tout \u2013 avec la maladie, sans renoncer \u00e0 la vie.1<\/sup> <\/p>\n

    Traduction pratique<\/p>\n

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    • Accueillir ce qui est l\u00e0 (frustration, tristesse) \u2013 et cr\u00e9er des espaces pour la confiance.<\/li>\n
    • Penser les r\u00e9ussites en petit : arriver en s\u00e9curit\u00e9 aujourd\u2019hui, tester une nouvelle routine, une difficult\u00e9 en moins.<\/li>\n
    • Activer le r\u00e9seau social : guides, famille, coll\u00e8gues \u2013 ne pas tout porter seule.1<\/sup><\/li>\n<\/ul>\n

      [\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb197215″]Quotidien & outils : des filtres de bordure \u00e0 l\u2019assistance via applications[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb156714″]La structure aide. Des horaires fixes d\u2019entra\u00eenement ou de th\u00e9rapie, des routines claires, des outils r\u00e9ellement utilisables. Pour certains, cela signifie des filtres de bordure et un bon \u00e9clairage ; pour d\u2019autres, des assistances num\u00e9riques, des aides \u00e0 l\u2019orientation, des applications de lecture, la synth\u00e8se vocale, des fonctions de zoom ou une gestion coh\u00e9rente des contrastes au poste de travail. L\u2019important n\u2019est pas la solution \u00ab parfaite \u00bb, mais celle qui convient \u2013 aujourd\u2019hui, pour ce quotidien.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=\u00a0\u00bbh3″ text_size=\u00a0\u00bbh3″ uncode_shortcode_id=\u00a0\u00bb737015″]M\u00e9decine & th\u00e9rapie : pourquoi la standardisation aide dans le suivi[\/vc_custom_heading][vc_column_text uncode_shortcode_id=\u00a0\u00bb897712″]La d\u00e9marche ou la routine qui ont du sens pour chaque personne concern\u00e9e rel\u00e8vent toujours d\u2019un cadre encadr\u00e9 m\u00e9dicalement : indication, intensit\u00e9 du courant, fr\u00e9quence, contr\u00f4les de suivi (p. ex. champ visuel, OCT) \u2013 tout y est planifi\u00e9. Les exp\u00e9riences ne se transf\u00e8rent pas \u00e0 l\u2019identique, mais elles donnent des rep\u00e8res pour poser les bonnes questions lors de l\u2019\u00e9change avec le m\u00e9decin. <\/p>\n

      \u00c0 retenir : les t\u00e9moignages compl\u00e8tent la m\u00e9decine. Ils ne d\u00e9cident pas \u00e0 la place de la m\u00e9decine.1<\/sup>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/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\u00bb178231″][vc_column width=\u00a0\u00bb1\/1″][vc_custom_heading text_font=\u00a0\u00bbfont-714446″ text_size=\u00a0\u00bbfontsize-914237″ text_weight=\u00a0\u00bb300″ uncode_shortcode_id=\u00a0\u00bb116870″]Questions fr\u00e9quentes de la communaut\u00e9 (FAQ)[\/vc_custom_heading][vc_accordion typography=\u00a0\u00bbadvanced\u00a0\u00bb sign=\u00a0\u00bbplus\u00a0\u00bb gutter_simple=\u00a0\u00bb0″ heading_semantic=\u00a0\u00bbh3″ titles_size=\u00a0\u00bbh4″ cvc_color_scheme=\u00a0\u00bbviolet\u00a0\u00bb cvc_background_color=\u00a0\u00bblight-gray\u00a0\u00bb uncode_shortcode_id=\u00a0\u00bb108876″ active_tab=\u00a0\u00bb999″][vc_accordion_tab gutter_size=\u00a0\u00bb2″ column_padding=\u00a0\u00bb2″ title=\u00a0\u00bb\u00ab Est-ce que cela signifie qu\u2019avec la RP je ne peux plus faire de sport ? \u00bb\u00a0\u00bb tab_id=\u00a0\u00bb1759218556287-4-4176460612869881764677093229″][vc_row_inner][vc_column_inner width=\u00a0\u00bb1\/1″][vc_column_text uncode_shortcode_id=\u00a0\u00bb684042″]Non. Le parcours d\u2019Anja le montre : le sport reste possible, souvent avec des adaptations \u2013 p. ex. avec un guide en paratriathlon, un entra\u00eenement planifi\u00e9, une gestion des risques claire. L\u2019important est d\u2019\u00e9valuer de mani\u00e8re r\u00e9aliste sa propre capacit\u00e9 d\u2019effort et de s\u2019accorder avec l\u2019\u00e9quipe soignante.1<\/sup>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab gutter_size=\u00a0\u00bb2″ column_padding=\u00a0\u00bb2″ title=\u00a0\u00bb\u00ab Comment parler de ma d\u00e9ficience visuelle avec mon entourage ? \u00bb\u00a0\u00bb tab_id=\u00a0\u00bb1764606518222-5-051764677093229″][vc_row_inner][vc_column_inner width=\u00a0\u00bb1\/1″][vc_column_text uncode_shortcode_id=\u00a0\u00bb127080″]La franchise par \u00e9tapes aide : dire ce dont on a besoin (p. ex. tandem, plus de lumi\u00e8re, des contrastes nets) et aussi ce qui n\u2019aide pas. Beaucoup de personnes veulent soutenir \u2013 elles ont besoin d\u2019indications concr\u00e8tes.1<\/sup>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab gutter_size=\u00a0\u00bb2″ column_padding=\u00a0\u00bb2″ title=\u00a0\u00bb\u00ab Que faire quand j\u2019ai un coup de mou ? \u00bb\u00a0\u00bb tab_id=\u00a0\u00bb1764606571712-6-421764677093229″][vc_row_inner][vc_column_inner width=\u00a0\u00bb1\/1″][vc_column_text uncode_shortcode_id=\u00a0\u00bb729142″]Les deux t\u00e9moignages le montrent : les coups de mou font partie du parcours. De petits pas, des routines fiables, des personnes qui avancent avec vous \u2013 cela soutient. Et : recourir \u00e0 un accompagnement professionnel (p. ex. conseil en r\u00e9adaptation, psychoth\u00e9rapie) est une force, pas une faiblesse.1<\/sup>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][\/vc_accordion][\/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\u00bb178231″][vc_column 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\u00bb963787″]R\u00e9f\u00e9rences[\/vc_custom_heading][vc_column_text text_lead=\u00a0\u00bbsmall\u00a0\u00bb uncode_shortcode_id=\u00a0\u00bb505528″]1 Renner A. Paratriathlon & vie avec le syndrome d\u2019Usher. Site web personnel. www.anja-renner.com. Derni\u00e8re consultation : d\u00e9cembre 2025.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

      La paratriathl\u00e8te Anja Renner parle ouvertement de sa vie avec la RP et de ses exp\u00e9riences avec la th\u00e9rapie OkuStim\u00ae \u2013 sinc\u00e8re, proche du quotidien, encourageant.<\/p>\n","protected":false},"author":10,"featured_media":1634,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[189],"tags":[],"class_list":["post-2629","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-portraits-dutilisateurs"],"yoast_head":"\nT\u00e9moignage \u2013 Anja Renner - Okuvision<\/title>\n<meta name=\"description\" content=\"Exp\u00e9riences r\u00e9elles avec la r\u00e9tinite pigmentaire : la paratriathl\u00e8te Anja Renner. Espoir, quotidien, th\u00e9rapie \u2013 un r\u00e9cit sinc\u00e8re.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/okuvision.de\/fr\/news\/erfahrungen-mit-rp-okustim-anja-renner\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"T\u00e9moignage \u2013 Anja Renner\" \/>\n<meta property=\"og:description\" content=\"Exp\u00e9riences r\u00e9elles avec la r\u00e9tinite pigmentaire : la paratriathl\u00e8te Anja Renner. 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