Recently Diagnosed with Retinitis Pigmentosa

I am 27, today i was diagnosed with retinitis Pigmentosa. my heart dropped. I work as a deputy in laww enforcement, i am a firefighter, i have a 2 year old son. maybe im over reacting a bit. but what happens to my life? my career? how will this progress?

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Re: Recently Diagnosed with Retinitis Pigmentosa



Hello! I am 27 years old. I was diagnosed with RP when I was 14. Like you I was devastated when I learned about RP but I learned that there is so many areas in which visually impaired are successful. There are alternative ways to do things such as using adaptive or assistive technology for the blind or visually impaired, having mobility training, doing adaptive sports, and using adaptive equipment for work.
Thus, there are so many ways to maintain a meaningful life.
I am pursuing my graduate studies in computer science. A visual impairment is like any other characteristic but not the defining part of an individual's personality. I focus on what areas of myself I can improve rather than focusing on my visual impairment. Nobody said it was easy but there is so much help out there to continue with your life normally. I have learned to do things differently.
I would recommend you:
- Find a support group.
- Get in touch with your state's Commission for the Blind. They provide referral and services for vocational rehabilitation to maintain or change employment.
- Be always positive.

Good luck!


Re: Recently Diagnosed with Retinitis Pigmentosa



There are many resources out there. There are also lots of publications that you can get as well. Some are free and some of them you have to pay for. Here are some of them just to name a few. Newsreel newsreelmag.org Future Reflections, and The braille monitor go to nfb.org then go to the publications link. Dialogue blindskills.com etc.


Re: Recently Diagnosed with Retinitis Pigmentosa



Dear JCapuzzi,
I was diagnosed with RP at age 25. It was a very scary time and I had no idea what it all meant and how it would affect my life and impact my career. I am now in my fifties and share with you that it probably is not as bad as you first imagine. I have had a very full and fulfilling life with RP. It is not always easy and it does require learning how to live with it and making adjustments as your vision changes over time. My vision loss was gradual. I lost my ability to drive at age 30 and then was declared legally blind at 35. I was able to work as a nurse for 30 years even though I was legally blind, I still had a lot of "useful" vision. Through vision rehabilitation therapy, I learned to use adaptive devices, access technology and skills that helped keep me employed. At some point, you will want to pursue these services and can find agencies in your area in the VisionAware directory at: http://www.visionaware.org/directory.aspx?action=b.... Narrow your search by entering your state. Most states offer Vocational Rehabilitation Services through the government as well and will help you figure out what is possible with your career and what training you may need to keep your job. You may have to change your specific job tasks and roles, but remain in the same field using technologies for the visually impaired. For instance, I could no longer function in the fast paced hospital setting, but could still do nursing jobs in Dr. offices. At some point, you may need to learn how to keep yourself safe while moving around. This is called Orientation and Mobility which teaches you travel skills with a white cane, how to get where you want to go safely and independently, how to use public transportation etc. Another helpful step to take when learning to adjust with vision loss is joining a support group. A support group can be a wonderful source of information, local resources and inspiration when you meet others who are living with the same challenges. And personal counseling can help to deal with grief, loss and sometimes depression as this is a normal part of the experience of losing your vision. I noticed on Facebook that you have already discovered online support groups. You may benefit from reading more about my experience in my blog at www.seeingpossibilities.com And go to www.visionaware.org to order your Getting Started Kit and to find lots of great information and tips on living with vision loss. Also check out the Foundation Fighting Blindness website for information specific to retinitis pigmentosa. Learn all you can about your disease so you can have a realistic understanding and expectations for the future. Wishing you all the best, Audrey


Re: Recently Diagnosed with Retinitis Pigmentosa



Hi, J. Like Mary, I too have RP. I was younger (11 years old) when I was diagnosed. The type I have is more progressive than Mary’s. Based on your current age and new diagnosis, I would guess yours may not progress quickly. Being in the field of law enforcement and serving as a fire fighter you may not be able to continue doing what you are doing right now. However, this doesn’t mean you cannot continue in your field in another capacity. People often switch to another area of their expertise. The American Foundation for the Blind has a site called Career Connect. It’s filled with information from people who have every career you can imagine! I know blind people who went to medical school and are now doctors—no, none are surgeons. Check it out!

Some people do change careers. I did. I returned to college at 40 and taught at Florida State University for thirteen years, and now my career has taken a different direction.

You can certainly be a good parent. You can certainly live a successful, fulfilling independent/interdependent life. There are probably services available in the area where you live for learning how to live as a person with a visual impairment. If you are a veteran, the VA has fantastic Blind Rehabilitation Centers around the U.S. that provide training.

As Mary said, you’ve taken the right step. Don’t stop now!


Re: Recently Diagnosed with Retinitis Pigmentosa



Hi. My name is Mary. I was diagnosed with RP when I was 18. My parents had been taking me around to doctor after doctor, trying to figure out why glasses wouldn’t help me see better, so in a way, I was relieved to have the diagnosis. That was in 1963. They know a whole lot more about RP now, and they are doing some pretty exciting research that very well may be helpful to you. You probably know that RP has an extremely broad spectrum of severity. I know people who are still able to drive with RP. Mine was a very slow but steady progression.
While I was visually impaired, I got a college degree, married, and had 2 children, neither of whom have RP. None of my 5 granddaughters are showing signs of it either. Depending on your visual acuity, you might still be able to continue your career, with some modifications, and you most certainly can continue as a parent. I’ll be glad to correspond with you if you like. I’m sure you have many question. Just please know that you can have a rich and full life, even with vision loss. Already, you’ve done the right thing by reaching out and trying to learn as much as you can.
If you are interested in corresponding, please send an email to me via visionaware@afb.net.


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