I don't have that disease but my retinas are progressively tearing and will probably flake off well before I die. As someone with a seeming inability to internally visualize things (aphantasia) and a terrible sense of direction I'm really dreading trying to navigate (or do anything) when I go blind.

I'm firmly in the denial camp and I justify it to myself by looking at all the amazing retinal repair, replacement, and implant studies in restoring vision in mice. The most promising are the implants that release a small molecule that can cause the internerons that remain to become light sensitive and fire. In the experimental mice this somewhat restores their behavior on navigation tasks. Of course I've been reading about these mouse studies for 20 years and so far going blind still means you remain blind.