I just saw this post, but my eldest daughter (15) and son (19) both have the disease. It hasn't affected my son's vision at all, but is wrecking havoc with my daughters. She's slowly lost 90% of her vision in her left eye and is at 20/80 in her right eye. She's undergone multiple surgeries (laser and open eye) to try to prevent the effects of the disease from getting worse and from losing her left eye completely.

What questions have you got about the disease?