Hi i was diagnosed with CSNB at the age of 3 months. It is not a progressive disorder and doesn't usually get worse or better. However different aspects can make the condition seem worse. I have short sightedness (that was worse when I was younger). I have a condition called Nystagmus which causes the eye to move around. The Nystagmus in my eyes has slowed down as i have got older. I also have low field vision which means I can only see directly to the front and i have to move my head left to right to see in other directions. I am 17 now and I am studying at college. Schooling isn't a problem as schools have Learning support teams which help with adapting and enlarging of work. However there are some things that i can't do. These include gaining a driving licence, working for any of the emergency services and various other professions, playing ball games (as my head kept on being hit by balls i couldn't see) and getting around on my own (epesially in the evenings and at night). I also can't read small text.
I get a taxi to college everyday and I had one through school too. this was because my mobility skills are not brilliant and i find it difficult to deal with traffic.
I get tired a lot because my brain tries to compensate for the loss of vision in the eye.
It also takes me a long time to read.
apart from that there are just small adaptations to day to day living such as leaving a light on in the evenings and sitting close to the television screen.
If you have anymore questions please don't hesitate to ask. I hope what i've said will help