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Has Anyone Here Been Diagnosed with Retinitis Pigmentosa?

Has anyone here been diagnosed with Retinitis Pigmentosa (RP)? It’s a rare inherited retinal disease that often starts with night vision problems and gradual loss of peripheral sight, sometimes progressing to tunnel vision. I’d love to hear how others were diagnosed—was it during a routine exam or after noticeable symptoms—and what management strategies you’ve found useful, whether that’s low-vision aids, lifestyle changes, or exploring clinical trials. How do you cope with the daily challenges, and are there support networks or resources you’d recommend?

  1. Hi , while your waiting for feedback from the community, I wanted to share a couple of resources:
    https://www.fightingblindness.org/search?category=all&query=Retinitis+pigmentosa
    https://www.fightingblindness.org/patient-resources

    I hope that helps. We're glad you're here with us! - Warmly, Donna (Team Member)

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