I have never been happier for a test to end. They showed me a series of flickers, flashes, and patterns for what seemed like ages. After two technicians inserted the lenses, grounded by a wire on a box around my neck, I sat for 20 minutes in the dark while my eyes “adapted” to the setting. I marched like a downcast soldier into a darkened room for an ERG (electroretinography) eye test. I felt panicked, but the assistant just scribbled down her findings and ushered me out of the room. My mind was working feverishly – optical neurons firing to fill in the blank space and produce an image for the missing puzzle pieces. Where I should have seen her hand, I only saw a fuzzy blur of the slate blue wall behind her. With both of my eyes open and moving – scanning constantly, I feel like my vision is normal. I blinked repeatedly and squeaked out, “I don’t know…” followed by a broken, “I can’t see it.” I had no idea I had blind spots. I was stunned by the fact that her hand had completely disappeared in several places. She moved her hand around, sweeping through my central and peripheral visual field, and asked me, “How many fingers?” repeatedly. That day, the research assistant sat in front of me as I covered one eye and fixed my gaze on her nose. At least it accounted for a bit of my clumsiness. A month after my eye exam at an eye institute in Little Rock, I recognized the extent of the loss in my visual field. I had spent my life blissfully unaware of the fact that I was slowly going blind. My heart was pounding, and my vision became blurry from tears. I saw a glint of recognition and compassion as I looked into his face. I was staring into his right eye behind his rimless glasses as he inspected the thin lining of the back of my left eye using an Ophthalmoscope. When you are 1 in 4000, the likelihood of an optometrist knowing how to recognize your disease is unlikely. Myers typed the words I carefully pronounced into a google search bar so we could look at pictures of the foreboding spots together. She was a wealth of knowledge, and the experiences she shared with me during the time after her diagnosis proved invaluable in my life. Together, we researched our disease’s genetic implications, and she was tested to confirm what we saw in our family tree. I had been with her through the aftermath of her diagnosis of RP for a year before I began to truly suspect that I had it also. My sister had taught me the term bone spicules, which are the hallmark of retinal degeneration and provide evidence of damage from the disease. I had also learned that to see the evidence of the disease, I had to look directionally during the exam to reveal damage in the mid-periphery of my retina. Although I was only there for an annual exam, I told him about the flashes of light and visual disturbances I was seeing, and I calmly explained that it was vital that he dilate my eyes and perform a retinal exam that day. I defaulted to my usual sunny disposition and asked him how his day was going. Myers greeted me, gathered my chart, and sat down on a stool to get to business. I was just beginning to wade into a sea of unmerited guilt and worry when the door swung open suddenly, and Dr. I was thinking about my husband and how he had no idea I could one day drop a “genetic atomic bomb” on our family when he married me. I was thinking about my three little girls and how RP could impact their lives one day. My skin was bronzed from our recent return from Florida for a family vacation, and I had pink pineapples on my sleeveless top. My gaze bounced from the eye chart to a brochure about glaucoma with a joyful elderly couple on the cover, and down to my bright toenail polish. I was sitting in an optometric exam chair, and it squeaked as I shifted nervously, waiting for my optometrist to come into the room. I won’t forget the details of the day, as it seemed as though I was moving in slow motion. I was diagnosed with the same eye disease at the age of 34, three years after my mother. Vision and Eye Health Awareness Calendar.Virtual Workshop on Inflammation in Viral Gene Therapy of the Retina.Preclinical and Translational Research Webinar Series.Accessibility Statement, Tips & Guidelines.
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