What is Retinitis Pigmentosa?


Dear Reader,

I’m very excited to start this blog. If you haven’t done so already, please click “About the Author” in the upper right hand corner of the screen to learn more about me, and my purpose for this blog.

If you’re unfamiliar with what Retinitis Pigmentosa is, especially if you have a loved one that was diagnosed with it, don’t immediately go to Wikipedia. The first thing it will tell you is it “leads to incurable blindness,” which isn’t always the case. Let me tell you what it really is, from someone who experiences it.

It is an eye disorder or disease which is also progressive. An individual who has RP can lose their vision at a slow rate or a fast rate, or somewhere in between. It is really different for every person. Some never become legally blind, whereas some become blind in their childhood. I have been fortunate to still have my sight, and I am about to finish my undergraduate degree.

In medical terminology, it is a “progressive retinal dystrophy,” and is an inherited disorder. There are abnormalities in your photoreceptors (aka the rods and cones in your retina) which cause the progressive visual loss. I love photography and love representing what is happening not only through text, but also through pictures. The picture below is a picture of what my retina looks like. This is only one part of my eye. The black dots you see around the border are the abnormalities mentioned above. They are “pigments” hence the latter part of the name “pigmentosa.” Basically, where the dots are, I can’t see. As the disease progresses the dots increase in number and density, which leads to the visual loss.

This is one part of my eye, where you can see the abnormalities.

There are two main ways RP affects ones vision. Usually first to occur, is night blindess. The term is pretty self-explanatory. You pretty much can’t see anything in the dark, except for very well lit areas. This makes travel, by any means, difficult in any dimly lit area, regardless of day or night.

Next to go is your peripheral vision. For me personally, this is what has made adjustment and coping with RP a difficult journey. I will explain more in future blogs. As I mentioned above, as the pigments become more dense and greater in number, your vision decreases. These dots close in around the border of your eye, making a tunnel.. (“tunnel vision.”) This can also lead to total blindness if the disease progresses to that point.

My central vision, with glasses, is 20/25. It is actually quite remarkable, and I am very glad for that. I use my great central vision to help make up for the lack of peripheral or night vision.

Now that you know a little more about Retinitis Pigmentosa, I hope you enjoy my future blog posts. If you have any questions, comments, concerns.. or would like me to address a specific topic, please let me know! You can leave an anonymous comment below.

Yours,
Jess

Published by

Jessica N and Makiko

Jessica is a proud Texan. She graduated in 2014 with her Master of Science in Rehabilitation Counseling and is now employed. She is visually impaired and has a retinal disease, Retinitis Pigmentosa. Originally Jessica started blogging about everything from being diagnosed with the disease to where she is now, almost 9 years later. Then, Jessica went to Guide Dogs for the Blind and was blessed with Makiko, her new guide dog. Now, her blog "The Way Eye See The World" is about everything related to visual impairments, including guide dogs.

2 thoughts on “What is Retinitis Pigmentosa?”

  1. I think it’s beautiful what you wrote, RP is a little known disease and working in Retina has helped me have a better understanding of individuals with diseases of the eye. I work with the young and the old but RP patients are some of the hardest to cope with b/c you know there is little to help. I find inspiration in my elderly patients with RP and they still have 20/20 central vision, they may not have peripheral vision but they can still see the world, there is still hope. I work with a retina specialist who’s wife has RP and one of his children has RP as well as a doctor who Jessica knows that is leading research in RP, just remember there are people who care. Thank you for sharing.

    1. Janae,

      Your kind words always mean so much to me. The inspiration part about the elderly really made me smile. 🙂 I hope to be like that someday, but even if I’m not.. it will all be great. 🙂 I’m glad you stopped by to read it and I really value your opinions and thoughts! I hope to hear more from you in the future. You are right, RP is such a little known disease. It’s interesting because Usher’s Syndrome is a more well known disease, and it includes RP. That always makes me think a minute.

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