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Living with Retinitis Pigmentosa

Updated: Feb 7, 2023

I was diagnosed with Retinitis Pigmentosa (RP) just over 5 years ago, but I had been showing symptoms for a few years. It started when I realized I was driving off the road at night because I was struggling to tell where the road ended and the grass began. At the time we were living in Tennessee, so I was driving a lot of back roads with little light. Looking back, I remember hitting a lot of curbs and busting tires. My family thought I was just a horrible driver, but in reality I was slowly losing my night vision and my peripheral vision.

Retinitis Pigmentosa causes progressive vision loss, typically starting with night vision and peripheral vision and moving in to the center vision. There is currently no cure and no way to know if I will lose all or only some of my vision. These past five years, I have noticed a big difference in how I am able to function in darkness or dim light. I frequently rely on my husband or kids to help me when we walk out into the dark night.

Overcoming the embarrassment has been hard for me. I will admit, though I am learning to use my cane, it is very hard for me to actually pull it out when needed. I have been a pretty independent woman as an adult and often relied on my own strength to get through some trying times, so to show any type of vulnerability like this is a learning process. I am trying to switch my mind to the truth, which is the cane is actually giving me strength and independence rather than showing vulnerability. Joining groups of fellow RPer’s has really helped with this.

I have learned to make light of some of these situations. For instance, at work when I need a giant cursor on my computer screen (which everyone makes a comment about), when I run directly into something that was in my peripheral, or when I reach for something that I think is the object I want, but it is really something else. Yes, I can laugh at these situations, and often share stories in order to laugh with others about them. Yet, there are still times when I feel shame about the big cursor, that I frequently miss the last step on the stairs, or that I fall a lot because of my vision. It isn’t always easy to laugh and be okay with it. Living with this involves constant changes and small adjustments on a daily basis, and cycling through grief as those little changes add up to what I know could be complete vision loss someday.

Because February is low vision awareness month, I wanted to bring awareness. So, here is a fun fact, total blindness is actually rarely seen, more often blindness refers to a person who has impairment in some part of their vision. This can include visual acuity, depth perception and field of vision losses. When you see someone with a cane used for vision, it is quite possible they will be able to look you in the eyes, but not see the curb in front of them. The cane aids in keeping us safe from many nasty falls!

I also hope that by doing another giveaway I can give a helpful donation. I will give a portion of the profits from this month's contest to The Foundation for Fighting Blindness. There are several new studies that show promise for curing RP and other diseases that cause visual impairment. So far none have been for the specific gene mutation that causes my disease, but any progress is good news for the millions of people dealing with vision loss. I pray for the day that I can drive again, I can see the outline of my kid’s faces in the dark room as I lay them down at night and I can actually see the food on my plate in a dark restaurant. So, whether you are joining in the contest to win an Amazon gift card or get a cool product that you want, know that you are helping others like me who are praying for a cure.

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