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What I Wish I Had Known About Retinitis Pigmentosa

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When I was in the 8th grade, I was diagnosed with retinitis pigmentosa. I had no idea what it was at the time, and didn’t really feel it affected me. I could still see very well, and most of the effects weren’t supposed to happen, or so I read, until one was older. Here is what I wish my family and I had known then…

Retinitis pigmentosa (RP) is an inherited disease causing retinal degeneration. It can occur and be diagnosed anytime from childhood to later adulthood, and varies in its speed of progression and severity. Growing up sighted and then losing your vision rapidly can be scary. You will have to make a lot of adjustments to how you do things over time, but with the right support and resources, it is entirely possible to live the life you want to live, and live it to the absolute fullest.

Retinitis pigmentosa is a very tricky disease. Night vision is usually the first to go, followed by peripheral vision, and then it gradually closes in, until it also takes out your central vision. The degeneration can come in waves. You can have stable vision for years and then suddenly lose a lot at once. In the advanced stages of RP, you might not be able to read a menu or identify a face, but still be able to tell someone is there and make eye contact with them. This can be confusing to the general public, who may not understand as well as they might if you had a more visible disability.

Research says many individuals with RP don’t start losing their sight until they’re in their 40s, but that’s not always the case. I’m 26, and I have lost the majority of my vision. I didn’t always recognize how much vision I had lost, like the time I missed a stop sign during my driving test. I tried to dismiss it, until I would catch myself missing many other things. I didn’t want to stop driving, but a friend with RP put things in perspective. What if I were driving, and a young kid decided to cross the street, and I didn’t see him just like I didn’t see that stop sign? How could I live with myself? I took my friend’s advice and eventually surrendered my license.

If you are diagnosed while still in the public school system, it will be highly beneficial to get an IEP (Individualized Education Plan) for services in the classroom and other supports that will affect your development. While I disclosed to principals and teachers that I had a visual impairment, I didn’t know special education or disability services could benefit me until much later, when I was a sophomore in college. I wish I had known. Many of my high school teachers did a great job with accommodating me, but a lot of broken bones and headaches (literally and figuratively) could have been prevented if I’d had a Teacher for the Blind or Visually Impaired and an Orientation and Mobility Instructor in high school. I would have been able to start the process of adjusting to my disability much sooner.

Outside of the school system, there are many other supports. Each state in the United States has a Vocational Rehabilitation (VR) program that prepares individuals with disabilities for employment. Most states also have a Division for Blind Services (or a name very similar) for individuals with vision loss. In Texas, our VR program starts working with children at the age of 10 to help them learn everything from independent living skills, to Orientation and Mobility, to specialized instruction in Braille, etc. If you have a significant enough visual impairment and qualify for these services, it is great to start early. However, you can also start as you are transitioning out of high school or college into employment. I found out about VR services after my freshman year in college, and started receiving Orientation and Mobility training, and later Assistive Technology, Independent Living skills training, and more. I highly encourage every family who has someone newly diagnosed with RP to contact their local VR program. There is also Lighthouse for the Blind and similar organizations in many states.

The above services helped me make great strides, increase my self-confidence, and develop more independent living skills. However, one of the things that helped me the most was meeting a young lady with RP. She was a mother to two beautiful children, graduated college with two degrees and managed her house independently. She had already been through what I was going through, and had great advice for me. She showed me how creativity goes a long way in terms of figuring out how to do things. She rocked being blind, and as one of the first people I knew with RP, she gave me a lot of hope.

She and her brother, who also has RP, introduced me to guide dogs. I always thought guide dogs were for individuals with total blindness, but in fact they can help individuals with RP, who might be able to see a person’s face but will miss every curb and bump or any obstacle that is not directly in front of them. Guide dogs can provide a lot of help in the nighttime, when the weather is bad, and as your vision degenerates. They can be that solid companion to help you with the emotional impact of vision loss. My Makiko has been instrumental in helping me maintain my level of independence. She has adjusted well to the changes in my vision, learning to help me with my new needs.

RP can be a roller coaster ride with its periods of stability and then sudden degeneration, constantly learning how to accommodate your new state of vision loss and continuing to do what you were doing. However, there are many resources out there that can make the roller coaster a little smoother. When I was diagnosed, my family and I all wish we had known about all of the services and support available. It would have made the transitions less of a headache.

I am now 26 years old. I am a huge family person. I am very active within my community. I am a full-time VR Counselor for the State of Texas and absolutely love my job. I live independently, love to travel, and have a great social life. I also have retinitis pigmentosa, and thanks to the amazing support and services I have now received, I live a very full life.

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Originally published: March 15, 2016
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