Search Message Boards » Retinitis Pigmentosa

Please login to post a response.

rp
Posted: 2007-12-02 13:33:54 By tehsin l
hi
my son also has rp he is 4 yrs. i am very depressed to see him facing problems in darkness.

Re: rp
Posted: 2007-12-04 12:17:31 By Robert W
Sorry to hear about that. I am 20yo. and i just go diagonsed with rp. Im in the Air Force and now i might be getting discharged. Or having to retrain. What all did the doctors say about your son.

Re: Re: rp
Posted: 2007-12-05 20:17:25 By Christina H
Robert,
I'm 24 and in the Marines, I got diagnosed last year in flight school and had to switch jobs. My Opthamologist in the Navy said that as long as you still have enough peripheral vision you can stay in. I don't remember the exact number but I'll try to look it up. Good luck. Feel free to ask me stuff if you have questions. You're the first other person in the military that I know who has RP.
-Christina

Re: Re: Re: rp
Posted: 2007-12-06 10:14:22 By Robert W
Did your doctors say anything about going overseas restrictions. And what jobs did you have a choice to retrain into. Did they say anything about getting put on deployable status or anything. I just got orders to overseas not but like 4months ago. Im really hope they dont get cancelled. And that i can stay as maintenance which is what I've wanted to do my whole life.

Re: Re: Re: Re: rp
Posted: 2007-12-06 17:13:38 By Christina H
Robert,
I got staioned overseas in Okinawa. The only limit would be if there is an opthamologist where you are trying to go, as far as I know. Deployable status really depends on how much periphery you have left. So far I'm still deployable. Maintenance should be ok, just make sure you talk to your CO and let them know about your limitations. If you can work in a hangar with lights on, you shouldn't have problems, but if your night vision is as bad as mine, you might not want to work out on the line at night. Just be honest with yourself and let your chain of command know what you need. You might have a whole bunch of eye appointments in a month where they will dialate your eyes and stuff. Also the Air Force might have different restrictions. Your opthamologist should be able to answer those questions for sure, most other people won't really know. Also if your eyes are too bad, make sure you get medically retired, that way you will keep your medical benefits.
-Christina

Re: Re: Re: Re: Re: rp
Posted: 2007-12-06 19:37:08 By Robert W
thank you christina. I really appreciate the advice. From all the stuff that i been hearin. What you said gave me hope. I been told that I am going to get discharged. That I am gonna have to retrain probably into a desk job. And so forth. So I've been really down and depressed alot this past week. I'd like to maybe get a support group for others in my area or maybe for those in the military. If you want you can just email at jeffwelder05@yahoo.com.

Bob

Re: Re: Re: Re: rp
Posted: 2007-12-17 18:53:19 By Scott T
To those in the military--I too have RP. Ushers Syndrome actually. I work for DFAS. If you're thinking of staying with DoD, but can't be in the armed forces, consider DFAS... You'll even get to keep your same pay!

Re: Re: Re: rp
Posted: 2007-12-25 21:49:12 By Amy Z
Hi Christina
Merry Christmas!! I am 28, got diagnosed in May 2007 with RP, was previously in the military (USAF-few yrs back) I am totally out now. My father is a Vietnam Veteran and has RP. He completed the 2 month Blind Rehab Program @ the Hines V.A. Hospital in the Chicago area. It's a wonderful program with some of the nicest people. I wasnt sure if anyone told you about it or if the military has informed you about getting in touch with your local VIST. There are so many resources out there for low vision Veterans. Just wanted to inform you. I have talked with Robert W. on this message board. Not sure if you are on myspace or not but if you are, look me up :)
arzs69@yahoo.com
AF Amy

Re: Re: Re: Re: rp
Posted: 2007-12-26 03:28:29 By Christina H
Thanks for the info, and Merry Christmas. So did you get out of the AF b/c of your eyes? or for something else? Also, is the low vis veterans program you mentioned open to people with RP too? I think I've read about it but it sounded like it catered mostly to people who lost an eye to shrapnel or something. Thanks
-Christina

Re: Military RP
Posted: 2007-12-26 10:21:24 By Amy Z
Christina,
No I didnt get out of the AF because of my eyes. I didnt know until May this year that I had it. In fact, I had seen several eye Dr's locally and they said I didnt have it...but I really did. My father has RP and was in the Army (Vietnam Vet) and he qualified to go there. The Blind Rehab @ the Hines VA Hospital is open to ALL veterans with all types of low vision issues...diseases, accidents etc... I went there almost every wknd to visit my father and I met some of the greatest veterans ever. Some were in car accidents and lost their vision, others had diseases that progressed over time. It doesn't matter how you lost or why u are losing your vision, just as long as you are a veteran. I believe you have to have a honorable discharge or be in good standing, but don't quote me on that. You should definitely contact your local VIST @ the VA Hospital. http://www.hines.med.va.gov/PAT/blind/

Check it out and if you have any personal questions about the Blind Rehab, my father would be more than happy to answer any of your questions. TTYS
Amy

Re: Re: rp
Posted: 2007-12-06 13:51:26 By tehsin l
doc says will need to watch him as he is too young they say tht their is the possibility tht it will it might go worse or stay same but doc dont gv me hope tht it cud also be cured.i dont know how to make my son independant without anyones pity.he is only 4 how will spend the whole life

Re: Re: Re: rp
Posted: 2007-12-10 20:20:02 By Diane S
Hi Trish...I am 56 and have had RP since I was about 4. although the actual diagnosis didn't come until I was 18. I know I had it early because I had all the classic symptoms. (My Mother and grandpa had it too) Although, I don't drive anymore I still work full time and work around my limitations. What I guess I am trying to say is that your son can live a productive life and the disease doesn't necessarily come on fast. Just keep going for regular checkups and encourage your son to accept his limitations, work around them and enjoy life.
Diane

Re: Re: Re: Re: rp
Posted: 2007-12-11 17:38:46 By Lis A
Hello Diane. I am Lis. I have a son who is 5 years old and he was diagnosed with rp some months ago. I am so depressed but I have felt very happy when I read about your life with rp since you were 4. Tell me more about it please. Have you been happy? Please let me know, I feel terrible for my son. Have you or your parents done anything about it when you were a little one.
Lis

Re: Re: Re: Re: rp
Posted: 2007-12-14 16:00:22 By tehsin l
thaks diane
it encouraging to read tht u living healthy life. my son has somehow realised he has some limitation. he has become more attached to me. normally children want to play with other children but as other ignore him as he cannot follow anything as fast as other children so now he only wants to play with me and my husband

Chapters