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• Posted: 2010-03-11 21:17:38 By Alison G
• Hello.
  My name is Alison. I have RP and wasn't diagnosed until the age of 38. I just turned 50 in February. I have three children, all of whom do not have RP. I do not have any relatives who have or did have RP. It would seem I am a spontaneous case.
  I quit driving three years ago. This has been a huge slam to my independence. Of course, this isn't any sort of revelation to anyone with RP.
  The slow dance with blindness is a dance I didn't want to go to, did not want to take part in, but nonetheless I am here in it.
  This message board thingy is a new venture for me. I am interested in visiting with folks who are encountering a life unexpected as I am. i am hopeful this is an fairly active site as just signing up for it was a huge step for me.
  I'm interested in hearing how others are coping with rp and what kinds of adaptive measures they use.
  I'm also interested in hearing how you all feel about this disease, what you think about on a daily basis, how you communicate to loved ones and others to facilitate them 'seeing' life from your perspective.

• similiar to you
• Posted: 2010-03-13 23:58:21 By Barbara D
• I read your message and i thought wow you remeind me of myself. I tto was told in my mid thirties that I had rp, and I also had three children at the time. All in diapers. I am also in my 50s, and joining this board was also my first step. Its like you want to talk to someone who knows what you are feeling. I don't think anyone can udnerstand how we feel let alone see or what we can not see. when I start to feel sad about it, my outlook on life is it could be worse. I can still see, and that is how I can go on. I try not to dwell on it and really I try not to think about it. Many people I know don't even know my problem. I hide it well. Though I am beginning to have problems driving and I think this will be my last year driving. I drive very little. The lost of my driving does scare me, as my twins sons will be going to college next year and I wonder what am I gonna do.

• Posted: 2010-07-07 07:19:58 By elizabeth d
• hi my name is elizabeth im 26. i was diagnosed with rp during a routine eye examinatin last year.i think im coping relitivly well with my condition with the support of my family. ive had to come to terms with whats going to happen with my eye sight in the future and its rather scarybut im taking each day as it comes. i have to go to hospital for eye injections because of the build up of fluids behind my eyes every so often. ive also had to have my home addaped with grab rails and night lights. i have a white cane which helps me get around too. i have a 9yr old son and it upsets me to think that he himself could develope this condition i take him for routine eye examinations and hes fine at the moment so my fingures are crossed he will be ok. just wanted to let you know that your not alone xxx

• RP
• Posted: 2010-09-20 22:23:11 By Cheri T
• Hi I was also diagnosed in my late 30's with RP at a routine eye exam, I am now 43. This is my first time on this site, and I read your message and it reminded me of myself. My children are 17 and 12, and both my children and my husband are VERY supportive, as well as my family. I have not driven in 2 years, so that has been huge for me, as I always have been very independant, and now its very hard depending on others, but I have great friends too. Lots of people that know me, don't know my condition, I do hide it well, I only tell people when or if I have to. My kids are very active in sports, and both need rides to and from their schools. My daughter has her permit, but she is very nervous to drive, once she gets a liscence, (hopefully in the next year or so)it will be huge help. if you need someone to talk with that understands you can email me at opccmt@aol.com you are not alone XO