My RP Journey

Did you know February is Retinitis Pigmentosa Awareness Month? As many of you know, I am diagnosed with Retinitis Pigmentosa, and I am often asked about my eye condition and how it impacts me in my daily life, so I thought I’d share with you a quick run down of some facts about my visual impairment as well as give you a peak into my RP journey.

What Is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is a rare, inherited eye disease that affects approximately 1 in 4000 people worldwide. Check out these 6 facts about RP you may not know, and be sure to read until the very end to hear about my personal RP journey.

1. RP is a progressive disease that causes the deterioration of photoreceptor cells in the retina, which are responsible for detecting light and transmitting visual signals to the brain.

2. The first symptoms of RP usually appear in childhood or adolescence and include difficulty seeing in dim light, loss of peripheral vision, and night blindness. I especially experienced nightblindness as a child, even though I tried so hard to hide it from my friends. Sadly hiding this symptom definitely caused more than one embarrassing bruise on my face!

3. RP affects both eyes equally, and the rate of progression can vary widely from person to person. Some individuals may experience rather stable vision with good acuity while others may experience a total loss of vision. In my personal case, I have what is considered to be light and object perception, meaning that depending on the lighting conditions, I can see certain objects and discern lights if there is high contrast.

4. There are several different types of RP, including typical RP, cone-rod dystrophy, and Usher syndrome, which is also characterized by hearing loss. For me, the type of RP I have continues to remain a mystery. I am the only one in my family with RP and I have not undergone genetic testing as of yet.

5. There is currently no cure for RP, but several treatments are available to slow down the progression of the disease, such as protecting your eyes with UV sunglasses, gene therapy, and retinal implants. There are also several clinical trials in progress for treatment of RP.

6. RP can also affect a person’s ability to perceive color, leading to color vision deficiencies and difficulty distinguishing between certain colors. I especially experience this and have great difficulty identifying colors at all. Luckily I am pretty good at keeping track of the colors and patterns of the clothing items I own, and many online retailers are getting more inclusive with their descriptions of products including colors and patterns.

My RP Journey

Since I received my diagnosis of Retinitis Pigmentosa at the age of 13, my vision has slowly changed over time. I had a surgery shortly after I received my diagnosis to help slow the progression of the disease and I was able to use regular print materials throughout the rest of middle and high school. I did not have to use a white cane at that time and many of my friends didn’t even know I had a visual impairment.

As I entered into my first year of college, however, the workload got increasingly demanding and I started having trouble keeping up with the increased workload. Luckily, I got connected with my local Division of Vocational Rehabilitation, and started receiving services to learn how to use assistive technology like the JAWS screen reader and portable magnifiers. I also learned how to start using the white cane and got pretty good at traveling all over my city independently on the bus line.

As it stands today, I still have really great days, and really bad days when it comes to coping with and managing my eye disease. I push myself to get out and about in my community to have brunch with friends or go get a manicure, but I still have times when I wish so badly that I could simply hop in the car and drive myself to the outlet mall or see the details of my handsome son’s face. I am blessed to have a successful career, supportive family and access to the technology I need to live an independent life, and I will keep wishing for that self-driving car – Apple I’m looking at you!

I am #RPStrong and I will continue to share my journey and experiences with you! If you’d like to learn more about my journey, be sure to check me out on Facebook and Instagram and feel free to drop me a question or comment below!