Vision Loss

Progressive Peripheral Vision Loss

Vision loss from Retinitis Pigmentosa often happens slowly. The pictures below show varying stages of peripheral vision loss. By the time I was diagnosed at age 16, I was already in the moderate vision loss stage. 4 years later, I am now legally blind with only 9º of vision.

Image depicting normal peripheral vision
Image depicting mild peripheral vision loss
Image depicting moderate peripheral vision loss
Image depicting legally blind peripheral vision loss

Images from All About Vision’s Visual Field Animation 

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Ozone Therapy

Intravenous Ozone Therapy in Havana, Cuba

Ozone therapy was nothing like I expected! When the 15 days of therapy were over, I was very surprised by the results. Through the ozone and electrostimulation therapies I gained back 4º of vision, bringing me to 9º. Nearly double what a saw before — and exactly what they promised I could get back. I only wish I’d found the clinic while my peripheral vision was better.

Never heard of medical ozone therapy? I hadn’t either! Check out this link for more information on some of its amazing uses.

In the video below, you’ll see part of my first day of therapy — my mom was so fascinated by the process that she recorded it on her iPhone.

This is the intravenous ozone method, and many of the patients in the clinic did ozone this way every day…

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After the first day of therapy, the ozone nurse, Yamile, was able to explain to my grandpa in Spanish that there was another way to do ozone therapy, and I decided to do it the other way because I didn’t like the massive needle she had to use — it’s similar to having plasma drawn. 

Even though the ozone therapy process wasn’t fun, the results were so worth it! In addition to getting back vision, we learned that Cuba uses ozone for other things, including as a natural antibiotic. I discovered the great part of that too, as I usually get strep throat in February, and that year, I didn’t get sick at all. The effects of the ozone stayed in my system for at least 3 months, and it was wonderful to feel so good!

We loved learning about ozone therapy and its many benefits so much that when we returned to the States, we invested in our own ozone machine so I could continue to reap the benefits without needing to return to Cuba.

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What Does RP Look Like?

Normal Vision vs. RP

My mom created this graphic shortly after my Retinitis Pigmentosa (RP) diagnosis to help my high school teachers understand my vision loss. It’s a quick and easy way to visualize what happens to those who have RP.

My vision has changed drastically since my diagnosis. I now have only 9º of vision left, and chances are good that I will lose the remainder of my vision. In an effort to slow that loss, I had surgery in Cuba.

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Fading To Black

Picture of Emma in 2014, the year she received an RP diagnosis

For my first post, I’m sharing part of an essay I wrote about the day I received my diagnosis. It captures much I was feeling on that fateful day. The above picture was taken less than 30 days after learning the awful news. 

“When I was five years old, I learned that the world I saw was hazy. Not like a foggy morning — houses, trees, grass, and even people only ever appeared as blurred shapes on a blue and green canvas. I naively believed that everyone saw the world the same way I did until I got my first pair of glasses. Life was much simpler then.

I was diagnosed with Kerataconus, a corneal eye disease, when I was 11. It wasn’t a big deal, really. I wore two sets of contacts for a year to help push the cones back to in an effort to keep the corneas healthy. I had no real issues, other than my vision continued to decline at a higher than normal rate. But by the time I was sixteen, and ready to get my driver’s license, it was obvious that glasses weren’t enough to help me see clearly.

My life was forever altered on September 10, 2014 when we met with a corneal specialist to discuss my worsening Kerataconus. The very first test produced unexpected results. So unexpected, in fact, that the technician conducting the test shut the machine down, restarted it, and then we repeated the process. The second test didn’t go any better, but he didn’t tell me what was wrong, either. After gathering data from a few other tests, the corneal specialist came into the room where my mom and I were anxiously waiting, and a look of concern crossed his face. It was almost imperceptible, but I could tell something was not right. Instead of telling us what he suspected, he asked to conduct a few more tests. Even though they say that you can’t fail a test at the doctor’s office, I knew that I wasn’t doing well in these new tests.

Each test was more annoying than the last, and I was getting a massive headache. Not once during the testing was I told what was wrong. On the final test, the doctor asked me to look at the his nose, and tell him when I could see his hands come into view. Thinking that it was a trick, I thought his hands never even came up until they were right in front of his face. My mom gasped. She knew what was wrong, but I didn’t understand that his hands had been moving from an outward position toward his face the entire time.

“You won’t be needing a corneal transplant,” the doctor told us. I was so confused, why after all those tests would he say that I didn’t need to have an operation to fix my eyes. He looked at me, took a deep breath, and said, “You won’t need surgery because that’s not what’s wrong with your eyes. What you have is unfixable. It’s called Retinitis Pigmentosa, RP for short. Your retinas are slowly losing pigment, and one day you will be blind.”

My world began to churn. What did he mean? Was I actually doomed to see my world through a smaller and smaller hole, until it all faded to black? The doctor had no answers, but asked that we wait to visit with the retinal specialist in the office to get additional answers. The waiting was awful, and it was nearly an hour before he had time to meet with us., Even then he was unable to give us any definitive answers because RP affects each individual so differently.

I fought back tears until I left the doctor’s office. I was supposed to go back to school, but mom and I agreed that I needed time to process the whole experience. As we drove home, I finally let the tears trickle down my face. All I wanted to do was go back to a time where I didn’t know the truth, and ignorance was my comfort. I took off my glasses and let the haze envelope me.”

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