Hello, I see this group doesn't generally have too much activity but I'm glad to have found you all just the same :) I have RP, specifically Usher's Syndrome type II. I was first diagnosed with hearing loss when I was about four years old; but wasn't diagnosed with RP until I was about 21 years old. I really didn't notice anything wrong with my eyes until I went off to college and found that I had difficulties getting around in the dark. I've never worn glasses until this point either. After my diagnosis I did got to Boston to the Eye and ear infirmary. I began to wear glasses for nearsightedness from this point on. In 1993 I went on disability, I guess at this point I had given up on myself and any
hope for a career and I was only 22 years old. I gotten married in 1994, but he died in a car accident in 1996. In August of 1997 I made up my mind to try working once again so I get off disability and re-entered the workfield. At first I worked various retail jobs that I was having more difficuties with moving around; after I remarried in Sept 1999 I decided to try my hand at professional jobs so I went to work for a bank. Now, it's been almost 10 years and I am still working full time in a back office support position where I am sitting most of the time. My vision have definitely progressed as my peripheral vision is nearly gone, but I still have my central vision although it is a bit of a challenge now that I have cataract in both eyes. I plan on working for another 2 or 3 years, Lord willing; and then I will either drop down to part time or go back on disability. I'm a writer on the side and I have this dream of being a published author for pay (right now I have a few short stories published in the non paying markets). Ever since I've been diagnosed with RP I have a very difficult time accepting this growing disability. This is probably because I am so independent and do not relish the thought of having to depend on others to help me get around. It has been down right frustrating at times. I guess I keep hoping there's a treatment or something out there that would slow this progression down. There are days that I think I would be willing to even try something radical if it would help my see better. Now that is probably wishful thinking on my part :) Well, that's my story in a nutshell.
Posted on 01/18/09, 03:01 pm
Hi! I'm also new here and was hoping for an active forum to compare visual loss and different methods of health improvement. That doesn't mean we can't make it more active though. I was just diagnosed last October and am now unemployed for the first time in a long time. I would love to be an encouragement to you if I can and hope to see you here again. 
