{"id":2127,"date":"2025-09-01T16:22:18","date_gmt":"2025-09-01T14:22:18","guid":{"rendered":"https:\/\/okuvision.de\/news\/retinitis-pigmentosa-mentale-gesundheit\/"},"modified":"2026-04-30T15:30:25","modified_gmt":"2026-04-30T13:30:25","slug":"retinitis-pigmentosa-mentale-gesundheit","status":"publish","type":"post","link":"https:\/\/okuvision.de\/en\/news\/retinitis-pigmentosa-mentale-gesundheit\/","title":{"rendered":"RP & Mental Health"},"content":{"rendered":"

[vc_row row_height_percent=”0″ override_padding=”yes” h_padding=”0″ top_padding=”0″ bottom_padding=”0″ back_color=”color-206913″ overlay_alpha=”50″ gutter_size=”3″ column_width_percent=”100″ shift_y=”0″ z_index=”0″ content_parallax=”0″ uncode_shortcode_id=”100151″ back_color_type=”uncode-palette”][vc_column width=”1\/1″]\n

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

\n Retinitis Pigmentosa and Mental Health: What Helps <\/h1>\n \n
\n \n <\/div>\n \n
\n Daily Life & Experience Reports<\/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=”0″ override_padding=”yes” h_padding=”2″ top_padding=”3″ bottom_padding=”3″ overlay_alpha=”50″ gutter_size=”3″ column_width_percent=”100″ shift_y=”0″ z_index=”0″ content_parallax=”0″ uncode_shortcode_id=”959669″ row_name=”Einleitung”][vc_column column_width_percent=”70″ gutter_size=”3″ overlay_alpha=”50″ shift_x=”0″ shift_y=”0″ shift_y_down=”0″ z_index=”0″ medium_width=”0″ mobile_width=”0″ width=”1\/1″ uncode_shortcode_id=”705359″][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”714121″]Why RP Affects Mental Health[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”165856″]Retinitis pigmentosa (RP) does not “only” affect the eyes, but all areas of life \u2013 from work and mobility to relationships. Studies describe a high psychosocial impact, partly because RP usually begins early, progresses slowly, and is incurable. Therefore, psychosocial coping strategies, education, and the maintenance of independence are part of care from the very beginning.1<\/sup> <\/p>\n

In a survey, 92% of those affected stated that RP influences their mental health.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”918241″]Common Feelings & Symptoms \u2013 and How to Categorize Them[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”104927″]At the beginning, shock, anxiety, and uncertainty often dominate. Later, the narrowing of the visual field can noticeably restrict daily life: things like reading, finding one’s way, sports, or driving become more strenuous \u2013 in studies, this correlates with lower quality of life, more anxiety, and depressive moods.1<\/sup> <\/p>\n

Independent of RP, studies on visual impairment also show: less visual function is often associated with more symptoms of depression and feelings of anxiety.2<\/sup><\/p>\n

Important: Feelings are understandable \u2013 and can be influenced. Write down your biggest hurdles (e.g., glare, twilight, orientation). This is exactly where help comes in: technology, training, environment.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”202388″]Charles Bonnet Syndrome: Concerning, but Explainable[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”754470″]With significant vision loss, visual hallucinations can occur (Charles Bonnet Syndrome) \u2013 up to 1 in 3 adults with advanced RP report this. This has nothing to do with “being crazy,” but rather with sensory deprivation. Speak openly about it during your consultation \u2013 shame unnecessarily prevents people from seeking help.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”182641″]What Studies Recommend: Education, Structure, Support[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”183198″]Education & Counseling. Medical teams should actively address psychological aspects, explain supportive offers, and \u2013 if necessary \u2013 refer patients to primary care physicians or counseling. Regular check-ups (usually every 1\u20132 years) make the progression predictable and provide security.1<\/sup> <\/p>\n

Peer Support. Contact with self-help groups improves coping, function, and autonomy \u2013 and relieves the burden on those around you.1<\/sup> <\/p>\n

Rehab & Low Vision. Magnification, edge filters, lighting, orientation & mobility, screen readers \u2013 intended as structured rehab, not “random finds.” This increases the scope for action and reduces stress.1<\/sup> <\/p>\n

Involving the Family. Relatives learn to recognize warning signs of depression and react constructively.1<\/sup>[\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”135683″]Perspective Through Preservation of Function \u2013 Briefly on TES (OkuStim\u00ae)[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”587702″]Many burdens arise when visual function is lost. Therefore, preservation of vision is a central goal: studies on transcorneal electrical stimulation (TES) suggest that visual field loss in RP can be slowed down.3<\/sup> <\/p>\n

The team concludes: if the annual loss is halved, the “half-life” of the usable visual field mathematically doubles \u2013 including the potential to permanently improve quality of life.3<\/sup><\/p>\n

Important: TES does not cure RP. Whether TES is suitable for you is determined by an eligibility assessment (goals, dose, follow-up checks). Details on our TES page.[\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”227724″]Everyday Toolbox: 10 Concrete Strategies[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”632037″]<\/p>\n

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  1. Establish routines<\/b> (fixed check-up & training times). Repeatability reduces stress1<\/sup> <\/li>\n
  2. Optimize light & contrast<\/b> (at home\/work)1<\/sup><\/li>\n
  3. Test edge filters\/magnification\/screen readers<\/b> \u2013 have them professionally adjusted1<\/sup><\/li>\n
  4. Train orientation & mobility<\/b> (white cane, route training)<\/li>\n
  5. Energy management<\/b>: schedule appointments, take breaks seriously1<\/sup><\/li>\n
  6. Communicate openly<\/b> (team, family): “What exactly do I need?”<\/li>\n
  7. Use peer support<\/b>: exchange relieves the burden and provides everyday tips1<\/sup><\/li>\n
  8. Exercise<\/b> (adapted): has a mood-stabilizing effect \u2013 and strengthens self-efficacy1<\/sup><\/li>\n
  9. Include digital helpers<\/b> (apps, voice output, navigation) in your standard kit1<\/sup><\/li>\n
  10. Check therapy options<\/b> with the team (e.g., TES) \u2013 preservation of function also supports the psyche3<\/sup><\/li>\n<\/ol>\n

    [\/vc_column_text][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”162430″]For Relatives: Helping Well Without Overwhelming[\/vc_custom_heading][uncode_list icon=”fa fa-minus” icon_color=”color-233806″ uncode_shortcode_id=”182687″ icon_color_type=”uncode-palette”]<\/p>\n

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    • Listen, don’t correct.<\/b> Ask first, then<\/b> help.1<\/sup><\/li>\n
    • Common rules<\/b> for light\/order\/paths \u2013 safety creates peace of mind1<\/sup><\/li>\n
    • Know signs of depression<\/b> (withdrawal, lack of drive, sleep disorders) and address them<\/b> \u2013 organize help if necessary1<\/sup><\/li>\n<\/ul>\n

      [\/uncode_list][vc_custom_heading heading_semantic=”h3″ text_size=”h3″ uncode_shortcode_id=”879273″]When Professional Help is Important[\/vc_custom_heading][vc_column_text uncode_shortcode_id=”103701″]Seek medical\/psychological support if[\/vc_column_text][uncode_list icon=”fa fa-minus” icon_color=”color-233806″ uncode_shortcode_id=”131968″ icon_color_type=”uncode-palette”]<\/p>\n

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      • anxiety\/grief are persistent<\/b>,<\/li>\n
      • daily life\/job no longer<\/b> function,<\/li>\n
      • hallucinations<\/b> worry you (Charles Bonnet Syndrome).1\u20132<\/sup><\/li>\n<\/ul>\n

        [\/uncode_list][vc_column_text uncode_shortcode_id=”756319″]Your ophthalmologist should actively consider psychological aspects and refer you if necessary.1<\/sup>[\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/1″][vc_separator sep_color=”color-183551″ uncode_shortcode_id=”577203″ sep_color_type=”uncode-palette”][vc_custom_heading heading_semantic=”h6″ text_size=”h4″ uncode_shortcode_id=”813554″]References[\/vc_custom_heading][vc_column_text text_lead=”small” uncode_shortcode_id=”161361″]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. Whitepaper for professionals: Transcorneal Electrical Stimulation Therapy. May 2024. (Evidence on the connection between low vision \u2194 depression\/anxiety, incl. literature references.) <\/p>\n

        3 Stett A et al. Transcorneal Electrical Stimulation Dose-Dependently Slows the Visual Field Loss in RP. TVST.<\/i> 2023;12:29. (Dose-response; potential contribution to preservation of function & quality of life.)[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

        Why RP is a burden \u2013 and what is proven to help: education, support, rehab, and preservation of function. With concrete strategies for everyday life. <\/p>\n","protected":false},"author":10,"featured_media":878,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[177],"tags":[],"class_list":["post-2127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-daily-life-testimonials"],"yoast_head":"\nRP & Mental Health: What Really Helps<\/title>\n<meta name=\"description\" content=\"Retinitis pigmentosa also places a burden on the psyche. Research shows what helps: education, support, rehab \u2013 and preservation of function (e.g., TES). 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