Hello all,

I have the results of the genetic tests. And it is RP type 45. A recessive mutation on both my CNGB1 genes. Night blindness from early on, followed by mid-periphery loss, then periphery loss, then loss of everything. Seems like the documented cases of it tend to be diagnosed around 30, but had experienced night blindness since childhood. I definitely have mid periphery vision loss. It is like a halo around my central vision. Totally blind by 65?

Well that's okay. I am only 29. That's like my entire life up to now doubled, expect being able to remember it all and being able to make my own decisions and stuff (I prefer adulthood). Then maybe 30 years of learning to live totally blind, but by then my kids (if I have them) will be grown, I will have fewer financial responsibilities. I would basically be retirement age. It could be okay. A challenge, but okay.

I guess I don't really have anything else to add... any one else have RP#45? Anyone heard of trials or treatments I might qualify for?

As to my mood, pretty happy it is recessive. And really happy that they actually found the problem gene. A little bit of a weird feeling of general sadness, I don't really know why. Maybe just because it feels realer. Everything makes it realer. I am starting to be okay with that, but there is still a bit of lingering sadness mixed in with bullheaded optimism.

Best,

Claudette