👋Welcome to r/XLRS - Introduce Yourself and Read First!

Why I started this

I was two years old when my parents first noticed something was off. I'm 32 now, and in all that time I have never once had a conversation with another person who has retinoschisis. Doctors, yes. Dozens of them, across two countries. But nobody who actually lives in it.

My file is thick. Appointments going back to 1995, a stack of reports in a language most of my current doctors don't read, which I've spent the last while photographing page by page so I can hand them to a clinic that will hopefully make sense of them. In 2018 I had retinal surgery. Then I moved abroad and had to start the whole explaining-myself process again from zero, in a new language, which was its own kind of fun.

The thing nobody prepares you for is the admin. The chasing of referrals. Realising that a report from twelve years ago exists on paper in a filing cabinet in another country and you are the only person on earth motivated to go get it. And underneath all of that, the quieter stuff — figuring out what you can still do, what you've quietly stopped doing, and whether to mention any of it at work.

I kept looking for a place where people talked about this and kept not finding one. So, here.

You're welcome here if you have retinoschisis, another inherited retinal disease, a diagnosis nobody can quite pin down yet, or if you love someone who does. Post your questions. Post the stupid practical stuff — lighting, screen settings, which kind of specialist actually listened to you. Post the hard days too.

To get things going, tell us in the comments:

1. Where you are, roughly

2. What you're dealing with, if you want to say

3. One thing you wish someone had told you earlier

Nobody here is a doctor. Take the experience, leave the medical advice.