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• looking to Network
• Posted: 2009-08-19 02:08:49 By Lindsey S
• Hello all, I'm new to the site and I'm looking to network with others with RP. I'm an 18 year old girl from California and I was diagnosed with RP this year. It has been tough and I am looking for others who share similar worries and difficulties from this disease.
  please respond to this message if you have RP and we can begin to dialogue about our similar hardships and hope.
  

• Posted: 2009-08-19 12:38:13 By Chris C
• Hi Lindsey I know what you are going through. I too was diagnosed with Rp at 18 my senior year of high school. Im 26 now and it is still tough to deal with.Dont let Rp stop you from doing the things you want to do in life.

• Posted: 2009-08-19 12:53:08 By Lindsey S
• Thanks so much for your response, Its nice to know that others have made it through what I am struggling with right now. RP is such a challenge, and I feel like I am alone when it comes to talking about it with others who have not experienced life "through my eyes". How is your sight doing now at age 26? does it effect your daily life?

• Posted: 2009-08-19 14:23:00 By Chris C
• yeah it has got worse over the years. I cant drive. It hard to get around I have to relie on family and friends. My central vision is going so I can see better out of me side vision better so its hard to read normal sized print. I do use a computer program called Zoom text that helps a lot. Heremy email if you want to contact me to talk mor.
  
  ccamp1966@gmail.com

• Posted: 2009-08-19 14:39:30 By Lindsey S
• I will email you soon to talk, thanks so much
  have a fabulous afternoon =)

• rp
• Posted: 2009-08-20 00:43:34 By Oscar N
• Hey,
  
  I was diagnosed at 17, i'm 24 now, it's rough living in a city like Las Vegas. I've been able to make it on my own, I try not to rely on others, so far so good.

• Posted: 2009-08-20 12:18:53 By Lindsey S
• wow Vegas must be tough Oscar. Do the brightness of the lights ever give you headaches or as I like to call them 'eye' aches? I've become more prone to spending very sunny days inside for fear of the light giving me an eye ache or worse, damaging my retinas more.. would you also like to give me your email? I'm trying to network with more people who are living with RP

• rp
• Posted: 2009-08-20 23:14:46 By Oscar N
• sure,
  
  essay818@hotmail.com
  
  "hit me up" whenever you'd like.

• Posted: 2009-08-24 22:01:31 By Kathy M
• Lyndsey,
  My daughter was diagnosed with RP when she was 18, 4 years ago. I just wanted to let you know that Voc.Rehab for the Blind will pay for all of your college expenses. They paid for everything for my daughter.

• Posted: 2009-08-27 01:25:19 By Mayra R
• Hi Lindsey,
  My son was recently diagnosed with rp a few months ago.... He is 11 years old. He doesnt tell me much about what is bothering him or how he is being affected. I noticed he had a problem when he was refusing to go out at night. I am wondering how night vision is affected by RP? If the lights are dimmed can he still see? Can you help me understand this a lil bit more. Thanks

• RP
• Posted: 2009-08-28 01:26:58 By Allen W
• Hi Lindsey! I can definitely relate. I'm a 19 year old guy from California also. I was diagnosed with RP last year, and tests are showing that atrophy is worsening. I'm very worried for my future as well, and am trying to change my lifestyle so that vision loss may progress slower. But I definitely still have hope! I'd really like it if we can network also. My email's wua05@pacbell.net

• Posted: 2009-08-30 00:32:59 By Lindsey S
• do you have a facebook Allen?

• Posted: 2009-09-23 15:44:51 By Pamela M
• Hi Lindsey,
  
  My name is Pam. I just moved to CA from VA. I was diagnosed with RP when I was 18 (my senior year of high school). I am now 31 and still driving. I think my new surroundings have made driving harder and am considering giving it up soon. I haven't been able to drive at night for the last couple of years.
  
  Please email me if you like. prichmo2@hotmail.com I don't know many people with RP either. I have gone to some support groups but have always been the youngest one there and never really felt comfortable. Hope to hear from you.

• Posted: 2009-10-23 00:30:08 By JACSON M
• HELLO LINDSEY,

• Posted: 2009-10-23 00:30:09 By JACSON M
• HELLO LINDSEY,

• Posted: 2009-10-23 00:46:34 By JACSON M
• WELL i'll like 2 say i had RP from the time i was 8yrs old,im 35yrs old now n i can say its been hard..well i can say one good thing out of all this i stayed out of trouble.i was not able 2 go to any clubs at night i can't drive at night,i can't drive when its raining.there is so much stuff u can't do but don't let that get u down cuz guess what i still drive when i really really have but hope is on the way just stay focus..n one thing u will notice when u are n a dark room n someone turn on the lights make sure 2 close ur eyes cuz its going to hurt for a second r two if u don't..n they say u need light but to much light well miss with ur eyes 2

• Hello
• Posted: 2009-11-29 04:04:30 By Jessica A
• Hello my name is jessica i am from kansas and i have rp i am 23 i was dignosed at age 14 i would love to chat with you and talk to you about my sturggles with rp and how it has changed my life you can email me at almondj02601@hotmail.com
  Jessica

• looking for a friend
• Posted: 2009-12-07 20:53:41 By Teri L
• My name is les and I am from Eaton Ohio and I have rp I am trying to find a good woman that will accept me for who i am , no one dont accept this terrible disease . If you want to chat musicaltelepathy@yahoo.com