Kathleen
Hi, I jusst read your message and I've been exactly where you are, I hope I can offer some help or support. I'm 50 and was diagnoised with RP when I was 48. I too have children, three girls aged 17, 15 and 11. My immediate concern was the possibility of passing this to them. I have a great retinologist and she was very supportive. She discussed the lack of RP in my family, I am the only one in a very large Irish family to have this. She said, unfortunately, I was the unlucky one to get a "hit" of a bad gene. She has my daughters tested annually and so far, so good. She presumes that all three have the RP trait and as long as they do not marry someone with the trait they should not pass this to their children. She drew great charts and I trust her. She has been brutallly honest with me about the disease and the course. I take vitamin A and have 70% of my vision. I am on restricted driving, must use a flashlight at night and do bump into things at homes that are unfamiliar to me. The girls know,to keep all soccer shoes, balls,lacrosse sticks etc. off the floor, otherwise I fall. My husband has also been very supportive and we are aware that my working career may be limited by this. I am a social worker, live in the suburbs and travel to midtown Manhattan. The travel in this past winter was a big problem, only to worsen. This disease requires constant adjustment and learning how to compensate. If I can be assurred that my girls won't have to deal with this, then I can move on. There are bad days and it helps to talk to other people who have similar problems. A good sense of humor is also important. I sstill have the problem of discussing the full illness tothe girls. The older one knows I have problems and I've been honest about not being able to drive at night.It's difficult for me to get the courage to sit them down and share the full range of what's to come. I keep looking for the rignt moment, and it's never there. Kathleen