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• So confused.
• Posted: 2007-12-06 19:48:43 By Robert W
• I just got diagnosed with RP earlier this week. I was told that I might have it a few months ago. I have no idea what to expect what to do. How to make it better. And just so many things running through my mind. I never knew anybody with RP before. The only person that does is a distant cousin. and everybody else goes talkin about it being hereditary. I might be loosing job soon in a few months which has been a dream of mine since middle school. Can anybody help or give advice. I keep hearin about so many people going blind. But before i heard that its rare for people to go blind due to RP.
  
  Thanks for all the help.

• Re: So confused.
• Posted: 2007-12-09 00:39:37 By Barbara C
• I think the most important (and simplest) thing you can do now is always wear sunglasses when you are outside. Read through the articles on this website and you may feel more informed, but there is no "cure".. There are some clinical trials going on now, however, which may be informative.... Keep reading this message board, too... Another way you can enter it (and you will find there is actually a second message board at this website) is to click on "community" then "message board" then "retinitis pigmentosa." You will also learn that there are many variations of RP and different rates of progression, and often does not lead to total blindness..

• Re: So confused.
• Posted: 2007-12-25 03:28:03 By Mark L
• I was also just diagnosed with RP on the 21st of December. I'm as confused as you are regarding the future. I'm sure it's going to be somewhere between really good and really bad. Whatever it is I'm trying to take it one day at a time. I've had a few breakdowns over the past days thinking about what life is going to be like when the time comes that I can't drive or potentially loose all my vision. I'm hopeful that there is a medical breakthrough that will stop the loss or even better restore sight. There seems to be a lot of good people on this board providing support though.

• Re: Re: So confused.
• Posted: 2007-12-25 21:36:58 By Amy Z
• Mark,
  My oldest brother who's 32 was also diagnosed on Dec 20th with RP. I am 28 and I was diagnosed in May 2007. I have 2 other siblings who havent been tested yet. My father (57) also has RP and recently got his white cane, stopped working and driving...been a crazzzy 2007. We have the Dominant Form of RP in our family. You are more than welcome to email me or call if u need someone to talk to. I know its a lot to swallow at first but know that you are not alone. Both my father and I have talked with USAF Veteran Robert W. above on the message board. My father completed a 2 month Blind Rehab Program @ the Hines V.A. Hospital in Chicago. All U.S. Veterans are welcomed to look into that program if they have or going to have low-vision. my email is arzs69@yahoo.com
  Hope you had a Merry Christmas despite the news. We were definitely experiencing the same feelings as you and your family the past few days. AZ