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• Living w/ RP
• Posted: 2010-04-09 14:31:24 By Alisson C
• Good Afternoon to all:
  
  My name is Alisson i'm 24yrs old and recently diagnosed with RP. I dont know how far back i go with RP because since my childhood i've always had trouble seeing at night and pretty much everything else like in school for example. I now dont know what to expect of it, This has been devastating. Can someone help, and or what to expect?
  
  Thanks.

• progression
• Posted: 2010-04-10 03:08:28 By Oscar N
• Hi Alisson,
  
  I'm 25, I've had RP my whole life, I was "diagnosed" at 17. For the most part, I've not noticed a terrible progression to this disease, I try to stay healthy, don't smoke, don't drink too much, take the usual vitamin A supplements. Until recently I did notice a change. About a year or so ago I noticed it was getting a bit foggier when i'd read my books, I didn't think much of it, blurry glasses or whatnot. But then I went to see my eye doc, and apparently I had developed a small cataract in one eye, my "good" eye unfortunately. This really bummed me out, so much that when the doc asked "do you have any questions", all I said was "no", and he said "okay, the receptionist will take your information". But inside I was really upset of course. So apparently people with RP are more susceptible to getting cataracts, on top of already having RP. The moral of this story, I have not noticed a huge progression in my RP, my night blindness has been the same since I can remember, I never really have been good in the dark, ever. Aside from the cataract, my central vision could be better, i'm still able to work, I can hide my condition pretty well sometimes, especially doing what I do. If you have any questions, feel free to ask.
  
  Oscar
  
  
  

• Hi Oscar...
• Posted: 2010-06-01 13:34:15 By Alisson C
• I'm sorry i could not get back earlier but finally i could log in...thanks for your response. I'm sorry to hear you have developed some type of Cataract in your good eye... when i saw my doctor he advised me that RP its different in many cases, i have notice many changes, but unfortunately i can not hide my condition, specially because i work a lot with the computer and lights everywhere!!! very uncomfortable! i have to be shutting of lights near me...i even have a screen protector in my PC...and at the end the darkness affects me as well so i'm guessing i will have to get used to all this...thanks for your response.
  
  If anything W/B, Take care...
  Alisson

• Writing Back
• Posted: 2010-06-13 14:34:22 By Oscar N
• You know I remember I use to get e=mail conformations from FFB whenever i'd get a response to any message I post here, not anymore though, so it's a bit tedious to go in and look for a response to a message posted you know?? Maybe I need to change some setting.
  
  Anyway, I too have been told by many doctors that RP comes in many different shapes...sizes too I guess, for the most part I think I haven't had it as bad as it could be. Though i'm beginning to think it's getting the best of me, especially since the cataract thing, then again I start to think it's all in my head and if you let that envelope your mind then it's hard to avoid feeling helpless, you know what I mean?
  
  Well thanks for writing back, hope to hear from you again.
  
  Oscar*

• Posted: 2010-05-13 16:39:55 By Shana K
• Hi Alisson! I am 23 years old and founded out I had RP just 4 years ago. Just like you though, I have had trouble seeing at night and pretty much everything my whole life. It has been real tough to adjust to these last several years let me tell you especially since at one point I was actually able to drive at night and able to see stars and now, I cannot do either. Definitely email me though, I'd love to talk to you further because I definitely feel your pain girl. Or you can look me up on facebook if you have one by my email as well. My email is Queenofthekassel@gmail.com
  
  Talk to you soon!
  - Shana

• question
• Posted: 2010-05-15 02:25:35 By Oscar N
• Hey Shana,
  
  Where do you reside at? If ou don't mind me askin'
  
  I haven't been able to see stars here, ever, heh. Just curious.

• Hello Shana...
• Posted: 2010-06-01 13:27:17 By Alisson C
• Thank you for your response, it has been though! I'm wondering, stars? is it more like flashes, going on and off? i see lots of flashes...sometimes i just have to close my eyes for a while...crazy huh?
  
  Talk to you soon..w/b
  Alisson

• Hi
• Posted: 2010-12-16 14:48:47 By jordan c
• I've had RP since I was 12 and I can tell you that you should try to enjoy your life and not worry about the lost of sight. You have options. You can qualify for Social Security Disability and other services from your state. The most important thing is to stay on top of the new breakthroughs and don't feel like your life is over. Let me know if you have any questions that I can help you with. Have a great Holiday!