When was I diagnosed with RP?
I was 33 years old when I learned that I had a retinal degenerative disease called retinitis pigmentosa. Commonly called RP for short, this genetically-transmitted disease destroys the light receptor cells in the retina, and with the death of those cells, areas of the visual field are lost permanently. RP is a typically slow, but progressive disease. While some people are diagnosed in childhood or adolescence, many don’t learn of the disease until their 20s or 30s. That was certainly true in my case.
What symptoms led to my diagnosis?
Looking back, I can now recognize that I had worsening symptoms over time, but the issues were minor and easily explained away. By the age of 33, however, I had begun to notice odd things happening that I couldn’t quite explain. It started with dropping small items like a paper clip or a pen on the floor, and being unable to find the object. Later, I would find the item exactly where I had searched for it. The more that happened, the more I began to notice.
I found myself running into obstacles, especially objects low to the ground like my son’s little red rocking chair. My vision became unusually jumpy and distorted with changes in lighting. I began having difficulty with some fine motor tasks like untangling IV lines at work.
My night vision had always been an issue, but it was worse than ever, and night driving became challenging. I had several fender-benders that didn’t make sense since I knew I wasn’t following too closely. These events added up over time, and I finally Made an eye appointment with my doctor.
How was I diagnosed?
After a detailed history and eye exam, my optometrist performed a computerized visual field test. I flunked it big-time. Following a normal MRI of the brain to rule out neurologic issues, my doctor sent me to a retinal specialist. The automated visual field test was repeated with the same results. A retinal angiogram confirmed the presence of a retinal degenerative disease, but the final diagnosis came after further testing and a second opinion. The Goldman visual field test was the definitive test that confirmed the diagnosis of RP, but other tests such as the ERG, light-dark adaptation, and a color vision test were also performed.
What was the pattern of my vision loss?
At the time of my diagnosis, it was explained that my vision loss followed the pattern of a “mid-peripheral scotoma. Essentially, I had lost significant vision in the middle part of my peripheral vision.
My physician used a donut analogy to describe my vision loss. When you consider a donut, I had excellent vision inside the area that comprised the donut hole. This area is responsible for focused central vision, and although my donut hole was very small, it was quite healthy.
The area that was covered by the donut itself was the region of my visual field where I had lost huge chunks of vision. This area housed my mid-peripheral vision. The far peripheral vision, the area outside the donut, was unaffected, and remained healthy.
How did the disease affect my vision at the time of my diagnosis?
Because my central vision housed inside the donut hole was still healthy, I had excellent visual acuity, meaning I could read the eye chart easily with some minor help from glasses or contacts. I could read or sew with no problem. My vision could be corrected to 20/20 with glasses.
Since the area outside the donut, in the far periphery of the visual field, was so healthy, I could see things appearing at the edge of my visual field. I could pick up items located above, below or to either side, but the items had to fall in the far edges of my vision.
It was the area in the middle, the donut itself, that caused me problems. Some of the vision in this area was completely gone, while other spots showed partial losses. Without being aware of it, I was constantly scanning, moving my eyes up and down and side to side,in order to pick up the missing areas of the scene before me.
Why didn’t I recognize I had the disease earlier?
It still amazes me that it took me so long to recognize that I had a problem with my vision. RP typically progresses slowly, and that was certainly true in my case. For many years, my eyes and my brain worked well together to fill in the missing portions of the picture. My eyes were constantly moving, scanning my surroundings to pick up the missing details. The brain then used that information to paint a picture that seemed whole and complete. I had no clue that my eyes were moving that much, nor did I see anything wrong as I viewed my surroundings.
Yet, as time passed, and the donut-shaped ring of missing vision grew larger, my eyes and my brain could not completely compensate for the missing areas of vision, and I began to notice. When I was finally diagnosed, no one was more surprised than me to learn how much of my visual field was already lost.
Finding out that I had RP certainly rocked my world and changed my life. Still, with time and support, I was able to forge a full and rewarding life despite the disease. In sharing my insights and experiences through these blog posts and my personal memoir, I hope to help others find life beyond vision loss..
Want more information?
For more detailed technical information on the disease process as well as updates on the clinical research regarding treatment options, check out The FoundationFighting Blindness at www.blindness.org
For excellent video and podcast offerings on coping with progressive vision loss, explore the resources at hadley.edu: https://hadleyhelps.org/
For real-life insights into the journey through progressive vision loss, check out my inspirational memoir, “Rough Places Smooth: Moments In A Journey Through Blindness” by Anita Peden Sherer. Now available on Amazon in paperback or Kindle ebook.
-APS 10/24/2024
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NOTE: these posts and references are intended to share helpful information and personal insights about coping with progressive vision loss. This content is not intended to replace appropriate medical advice. For specific concerns related to your personal vision, please consult your doctor.
Want to read more of Anita’s story?
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Rough Places Smooth:
Moments in a Journey Through Blindness
by Anita Peden Sherer
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Faith Beyond Sight 