Experience with Rare Eye Diseases like Retinitis Pigmentosa?
I recently learned about Retinitis Pigmentosa (RP), which is a rare inherited eye disease that slowly affects the retina and can lead to night blindness and tunnel vision. My family has a history of vision issues, and we consulted Dr. Stuart Terry, who explained the condition and the latest options for monitoring and managing it.
I’m curious to know if anyone else here has experience with RP or other rare retinal diseases. Which doctors or specialists did you consult, and what approaches or treatments helped you manage the condition? Any tips or personal experiences would be really helpful!
Hi,
! I believe we have a few members of this community living with RP and I hope they see your post and comment here! I wanted to share a conversation from earlier this year on this disease that I thought you might find helpful -- https://raredisease.net/forums/has-anyone-heard-of-retinitis-pigmentosa-rare-eye-disease-discussion. And here's another link to a brief discussion on RP -- https://raredisease.net/forums/has-anyone-here-been-diagnosed-with-retinitis-pigmentosa. I know there isn't much traffic on this site, so if you are looking for a lot of input, it looks like there is a pretty active Facebook group dedicated to RP which you may want to check out -- https://www.facebook.com/groups/jacquelinemeek/. I know some times, I want lots of input and sometimes, too much can be overwhelming. I do hope this information is useful for you!
Best, Erin, Team Member.
