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• Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 14:32:23 By Mark L
• I'm a 44 year old professional in the IT industry that just learned I have RP. I thought something was wrong in the Feb / Mar timeframe but just got the final word now. I've been told that the "good news" is the older you get RP the slower the it takes over. Does anyone have any information on this ? Also, I was told by my doctor to start taking vitamin A immediately. Does this really work ?
  
  I'm currently going through an emotional roller-coaster ( as I'm sure everyone else has gone through ). Now that I know that I have the disease I keep thinking I'm getting worse by the day. On another note, everything I've read the problem normally starts out with loss of night vision. I don't have any issues with my night vision at all ( or at least I don't believe I do ). I have reduced my peripheral vision which was the first sign.
  
  I would appreciate anybody's help on this. I know I'm driving my wife crazy surfing the web 10 hours per day and having her join me on my emotional roller-coaster.

• Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 17:19:56 By Reyne K
• Mark,
  
  I too, was diagnosed later in life at age 55 just a year and a half ago. Yes, RP can be more stable and progress really slowly when presented later. This is what I have been told and also read. If one has to have this disease, this is the age to acquire it even though it is congenital.
  
  As many on this site will tell you---the Vitamin A controversy is well documented with most people against it. There is no cure yet for RP as you probably already know. Make sure you are being treated by a retinal specialist or vitreo retinal surgeon who knows what he is talking about. Sometimes a regular ophthalmologist can't diagnose the condition correctly even though they have your best interest at heart. It is not their specialty. I am sure others on this very insightful web site will add their medical insight.
  
  In the meantime, Have a Blessed Christmas, with Peace, love and joy to all in the New Year!!!
  
  ~Reyne
  

• Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 19:12:46 By Mark L
• Thank you for the positive message. I think I'm just going through the emotional unknown phase right now. I'm sure as time goes on I'll settle down and deal with this. I have gone to Retina specialists and also to a specialized eye clinic. I guess all we all can hope is that there will be a cure sometime in our lifetime AND our problems progress slowly. I'm not good at unknowns and not knowing for example how long I can work. My doctor told me that he believed it would be 20 years before my vision was impacted to the point where my life would change. I think he was telling me that though to make me feel better. Are there any studies that you are aware of that track age discovered with progression of the disease ?
  
  Again, thanks for you quick response. Have a great holiday.
  
  Regards,
  Mark

• Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 18:22:32 By Al U
• I know exactly what you are going through right now as I was recently confirmed to have RP about 2 and a half months ago. I also work in the IT field and have spent literally 100's of hours reading everything I could about the disease. My fiance whom we both said we were soul mates left me 5 days after the confirmation of the disease. We where to be married in 6 months. Talk about the emotional rollercoaster; I am still devistated she left me and wants nothing to do with me. I think she is carrying a lot of guilt. Don't stress your wife out. Give her time to go through the grieving, fear, and education of the disease. You and her might not be experiencing the same emotions at the same time so concentrate on stregnthing your relationship (make it a priority). I may have scared my ex as I was worried and unsure about our future.
  
  I am 37 so I was told the same prognosis but my retina specialist says that my form is sector RP (for now) so it is typically slow to grow and in many cases will only affect 1/4 to 1/2 my retina. No one can tell you how long or how fast it will progress, everyone is different. As far as the vit A, I am taking it but have let my doctor know so that he can monitor my liver function (it can cause liver toxicity). Take care of yourself, as I try to do, but I can't help but to be very sad and angry everyday about the situation. My life was just starting and everything has come crashing down. I know that I am a good man, great friend (have tons of freinds who are there for me everyday), would have been a super husband, father, and son to my in-laws.
  
  Keep educating yourself but don't let it overwhelm you as there is not too much that doctors can do for RP right now. Let me know if you need to communicate more. I feel your pain as everyone else has and does here.

• Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 19:22:50 By Mark L
• I'm sorry to hear about your situation. I'm concerned that this is too much for my wife and frankly don't want to put her through this. I'm not only concerned about the problem but also my personal life. You are still young and will meet someone else !
  
  My doctor didn't tell me anything about the type of RP that I have. He frankly gave me little information other then see you in a year. Any good information you can point me to would help regarding studies and/or types of RP.
  
  I am concerned about the Vitamin A liver issue. I've have high liver enzymes already ( unknown why ) so I need to speak with my regular doctor in the coming weeks.
  
  The tough part is of course the unknown. What were your first clues that you had an issue ? I don't have issue with night vision at this point but have lost my peripheral vision.

• Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 22:43:14 By Marisa P
• Mark,
  
  When we are diagnosed with RP, it affects everyone around us. Fortunately, it's not physically painful and it is not life threatening. However, it does take constant adjustment. If you get a chance, read the old posts and you'll get lots of info.
  
  When it comes to vitamin A, many of us are taking it along with DHA, lutein and other supplements. I personally feel that anything we can do to stay healthy is going to help the eye health even if it may not slow down the RP.
  
  I was in my late 30s when I was diagnosed with RP, but I can think of times when I tripped over things left on the floor as far back as my teen years. Night blindness wasn't a big issue either, but I couldn't see as well as my siblings without RP. I think we adapt to what we have so it is difficult to tell if we really have a problem until it has progressed.
  
  When you go have your eyes checked, ask questions because if you don't, they will not tell you anything. What is your visual field now?
  
  Enjoy life! Nobody really knows what is ahead with or without RP.

• Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 11:50:03 By Mark L
• Marisa,
  I'm not sure what my visual field is right now. Is that the side vision ? My central vision is 20/20 ( left ) and 20/25 ( right ). They checked my color vision ( reading the 10 blocks ) and found that I could see 9 out of 10 which they said was normal. My current thought is that I need to find out the type that I have and hope that I can work AND drive for at least 5 -8 more years. I didn't have any issues when I was younger except the normal glasses and such. I have noticed a change in my side vision and flashing lights really just over the past 2-3 months.
  
  What is your situation ?
  
  Thanks for your words of encouragement ! You are right it's not life threatening nor painful.
  
  Mark

• Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 12:16:26 By Marisa P
• Mark,
  
  It is quite normal for RPers to have good visual acuity as RP really doesn't affect the central vision until the later stages. Yes, the visual fields is the peripheral vision. Have they done an ERG? Over the years I had doctors who preferred not to do the ERG because there is no cure for RP anyways. The first one I had was two years ago (I am 53) and I had between 15 and 20 degrees left, which is legally blind. I stopped driving this January because I retired on disability because of RP and I just didn't want to have to regret driving knowing that I am legally blind. There are many out there driving with worse conditions, but that is not me. I was fortunate enough to be able to have a career teaching at the university level for as long as I did. It got to the point where it was just too stressful for me so that is why I just retired. My brother had to retire at 45 from his position as a programmer analyst. I think his RP got compromised with diabetes, which also affects the eyes. That is why it's important to take care of your health. Other than that, there is no known history of RP in our family.
  
  Don't lose hope and keep doing what you are doing until you no longer can. We are always breaking down obstacles in life and this is just one more. Driving or not driving is not the end of the world. It just means that you have to car pool, depend on public transportation or others to get around and there are thousands doing that even without RP.
  
  They still have lots to learn about RP so I don't know how much you will learn by finding out the type. It would be helpful to know if you ahve children and, of course, as gene therapies become available, that would help. I actually have Usher Syndrome, which involves hearing loss as well as RP and I am currently trying to find out the gene mutation. SInce both my parents died young, they are taking the DNA sample from my one sibling who doesn't have it to speed up the finding as they have not been able to identify my gene as of yet.
  
  So, remember to avoid things that may harm your eyes even more, such as medications, and wear sunglasses when outdoors. We may have RP, but it doesn't have us.
  
  Merry Christmas

• Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 13:32:29 By Mark L
• Marisa,
  I don't have the exact numbers for my side vision except that one of the doctors said it wasn't good. When I get back home ( out of town right now ) I'm going to get all the numbers.
  
  I fully understand the health issue and the need to stay as healthy as one can. I guess my whole focus going forward is now to ensure that I keep healthy and do everything in my power to live a normal life and preserve the site I do have.
  
  When were you and your brother diagnosed with RP ? Nobody in my family is aware of anybody having the disease BUT my father was also adopted so I only have visibility into my immediate uncles and aunt.
  
  Thanks for the words of encouragement. I can't believe what people did for support prior to having things like the Internet available ! Like I said before though, my focus is to make it through the next 5 years ( puts me at 49 ) before I need to retire or figure out something else. One good thing I did years ago was take out a long term disability policy that will pay until I'm 65. I just need now to review the policy and make sure there isn't any loop holes !

• Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 14:37:24 By Darran Z
• Mark,
  
  I'm Darran. I have Usher (RP and deaf).
  
  The Vitamin A is quite conterversial. I am well connecte of suchd to well respected clinicians. My own doctor is an FFB researcher and questions it (He's a Harvard/MIT graduate) as well as my previous doctor who is now a Vice-chariman of the Scientific Advisory Board at the FFB. He also questions it. I know others in such status that question it. The author of this study is the only one who can convince anyone of this. If you are worried, then take the beta-cartotene format because the liver will convert it to palmitate form as your body needs and excretes the rest as it is water soluble. But the study is quite conterversal at best.
  
  Now as to the type of RP you have, it is likely to be an autosomal recessive form, meaning if you have any children, none of them will have it. You probably don't have any history of blindness in your family by chance? The other inheritance forms (autosomal dominant and X-linked) will have family histories of this.
  
  If you are struggling with employment and need assistive technology to remain on the job, you can contact the state blind agency and speak with a Vocational Rehabilitation counselor. You would be protected under the ADA law from discrimination by an employer and VR will purchase any device you need to remain at the job or learn new skills. So there are options out there. You just need to know where to start.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 14:45:44 By Mark L
• The only person that I can track down who has any eye condition is mothers uncle who at 95 has Macular Degeneration....not sure if this is related or not. What form of RP is the slowest and which one is the fastest ? I was told by my doctor that its very slow but not sure if he's correct. As I've stated in my previous threads, I'm just looking at working another 5 - 8 years. I've thought about another carrier but at this point I'm sure if it makes sense. I've been in IT management for almost 15 years. I think it would be difficult to be in management and have significant vision loss. I'm sure I can get away without driving but anything past that would be difficult...but then again maybe I need to open my eyes a little and think outside the box !

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 14:54:28 By Darran Z
• Mark,
  
  No AMD is not related to RP.
  
  There are 100's of genes responsible for RP so it's hard to say. But given the late diagnosis, it is likely a slow form and that you may never go completely blind. In fact most people with RP do not go completely blind and retain some useful vision.
  
  You might be surprised what technology is out there. I know Blind Computer Scientiests, programmers. What platform are you using? Most of the accessibiliyt software is on Windows platforms, but there are some for Linux and Apple. You just need to know where to go. So being in IT isn't the issue since alot of accessibility stuff is there. Screen readers, for example. They have scanners that you can scan your papers into and read it from a computer. So don't sell yourself too short because of RP. Technology is an amazing thing.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 14:54:32 By Darran Z
• Mark,
  
  No AMD is not related to RP.
  
  There are 100's of genes responsible for RP so it's hard to say. But given the late diagnosis, it is likely a slow form and that you may never go completely blind. In fact most people with RP do not go completely blind and retain some useful vision.
  
  You might be surprised what technology is out there. I know Blind Computer Scientiests, programmers. What platform are you using? Most of the accessibiliyt software is on Windows platforms, but there are some for Linux and Apple. You just need to know where to go. So being in IT isn't the issue since alot of accessibility stuff is there. Screen readers, for example. They have scanners that you can scan your papers into and read it from a computer. So don't sell yourself too short because of RP. Technology is an amazing thing.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 15:04:37 By Mark L
• At work I'm all windows but at home I'm all apple. This does give me a lot to think about though and you are right about the aids that exist. Who knows maybe I can take my IT skills and refocus them on supporting people like us !
  
  Do you know of any studies that link age determined with slowness of the disease ? Also, when you say useful vision, what does that mean ? Sorry for all the questions but just trying to figure things out.
  
  thanks again !
  Mark

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-23 15:38:22 By Marisa P
• Hi Mark,
  
  Darran gives you lots of info here so be sure to take note of it. I think that, even within the same type of RP, the amount of loss varies from individual to individual so it's difficult to compare yourself to anyone else.
  
  I also don't thin k it means anything as to when anyone was diagnosed since some people are already legally blind when diagnosed. Doctors are getting a about being able to make an earlier diagnosis now though. The important factor is how much sight one has left. Again, that's my opinion.
  
  Yes, it is good to have that long term disability insurance. My brother has been collecting that along with SSDI for the last 7 years. He will keep getting it until he can officially retire from the company.
  
  Again, use all the resources you can to retain your job as long as possible. That is, for as long as you want to work and/or feel that you can do your job efficiently without endangering yourself or others.
  Useful vision is enough vision to be able to read ...as opposed to seeing nothing at all.

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-24 15:29:19 By Paul S
• I was diagnosed at age 2, due to family history as I have x-linked RP.
  
  I am now 37 and have worked since graduating college in the IT and software development fields, and now currently managed a software development team.
  
  I have only 3-degress of field vision left and it has started to impact my central vision. I worked with the Texas DARS group and my employer to get some assistive software and magnifiers and try to let those around me know when I cannot see things. I made it to age 35 before pursuing any assistive training or help, long past the point of being legally blind.
  
  I know at some point I will take a disability retirement but I can't see that happening in the next 5 years as I do enjoy working and it is hard to let go.
  
  My point is simply that a diagnosis of RP and even reaching the point of being legally blind should not be perceived as a roadblock in continuing in the IT field as there are many tools and devices to make the job easier. With work on a computer it is easier to control the environment in which you work and make it work for you.
  
  Good Luck, Happy Holidays.
  Paul
  

• Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2007-12-25 22:33:24 By Amy Z
• Merry Christmas Al!! I found your message very interesting. To start off, you are not alone. It seems like I have read quite a few messages on the message board with ppl getting diagnosed right before Christmas....Well, my brother is also one you guys who's been recently diagnosed with RP. He is 32, was diagnosed Dec 20th 2007. I am 28 and was diagnosed in May 2007 with a Autoimmune Type of RP. We have the Dominant Form of RP in my family so we all bump into things lol. I handle things differently because I knew I had it all along. I knew it was in the family, affecting multiple ppl in every generation.
  
  I am very sorry that your fiance decided to jump ship...it's her loss in the end. A weak link in your life is the last thing you need. This message board, to me, is a VERY strong link of some wonderful, down to earth, REAL ppl. Don't ever feel like you won't find someone, cause when timing is right it will happen. I have been divorced for 3 yrs now, with 2 young boys and still living single. I never know if I should tell the men I go out with that I have RP etc.. but then if I dont they are gonna wonder why I am hanging on to them while walking thru the resturant/bar or bon fire. They prob think I like em' a lot when really I can't see lol. I try to find humor in everything that bothers me. But if you ever want to talk, feel free to email arzs69@yahoo.com
  Take Care and Smile :)
  AZ

• Re: Re: Just learned that I have RP... merry x-mas
• Posted: 2008-01-16 03:05:05 By SUSAN G
• Hey all, 12 years ago I was diagnosed with RP. I was so angry, Here I was a single,healthy funloving, independent 36 year old mom of 3. I had a great job, working as a manager of a Blues Club. Why me??? I have since found out why, but thats a whole 'nother story.. Although I had already seen my dad deal with RP and was familiar with the stages, I too wore out my computer searching for anything I could read about RP. Although I had to quit driving and give up a great job (no public transportation in our small town) I have taken up carving, woodwork, and now have time to do all those things I never had time for. Al, right now you are so better off without anyone that cant deal with your disease. How would she feel if you left her if she had been diagnosed with cancer? You are going to find the humor in this disease. Like when people talk louder after finding out you are blind. IM BLIND NOT DEAF!! My sister, niece, and my brother also have RP. When we all get together it's like watching and participating in a human pinball machine, We are constantly bouncing off each other. It really is funny. "God give me the serenity to accept AND LAUGH at the things I cannot change, change the things I can, and the wisdom to know the difference"