Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion
Hi everyone,
I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty seeing at night and a gradual loss of peripheral vision.
Has anyone here or someone you know been diagnosed with RP or any other rare eye disease? I’d love to hear about how it was diagnosed, what the symptoms were, and how you're managing it. Also, are there any opticians in London or specialists you'd recommend for genetic or retinal eye conditions?
Looking forward to hearing your experiences or insights , this could help others dealing with rare eye issues.
Hi
, welcome! We have had another member with rare eye disease, and I wanted to share a link to his forum post so that you could reach out on the forum - https://raredisease.net/forums/anyone-had-a-rare-eye-condition-first-spotted-during-a-routine-eye-exam - I hope that helps! If we can help with anything else, please don't hesitate to reach out! - Warmly,, Donna 
Hi,
and welcome to the community! I have to admit that I do not have any personal experience with rare eye diseases, so I won't pretend to know what you are going through.
Also, since I am based in the US, my ability to offer helpful advice for you is a bit limited, especially when it comes to physicians and treatment in London. I did find this information about RP, which does include information about various ongoing studies and clinical trials, which may be of interest to you -- https://www.fightingblindness.org/diseases/retinitis-pigmentosa. Again, if the trials are based in the US, your doctor may have to jump through some hoops to get you included in them, should you choose to go that route. There is an option you can select for the UK region, which I did, so you may be able to find useful information geared towards your area. This was some of the better information I found, so I hope it is useful for you.
Since we are quite limited on information for people living with RP, I do hope you will hang around and share your journey with us, if you feel comfortable doing so. While we may not be able to relate to your condition, everyone living with a rare disease knows how challenging it can be and we here at raredisease.net are rooting for you!
Best, Erin, Team Member.
