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Anonymous Story

"I will be sharing my story about a rare eye disease I was diagnosed with at a young age.


When I was in grade school, I went into the eye doctor for an annual check-up and during that appointment my doctor noticed strange spots, after some analysis, he diagnosed me with a rare eye disease, which, at worst, can cause total blindness.

A few weeks later, I received laser eye surgery in my left eye to prevent the spots from spreading and causing more damage. My doctor believed that I had already lost some of my peripheral vision in my left eye.

My doctor was an optical surgeon and I was his youngest patient. Most people that saw him were getting cataract surgery.

Turning for the worst:

After graduating college, I noticed black and white flashing constantly in my right eye. I had never had problems with my right eye so I quickly found an optical surgeon in the area and booked an appointment.

Since I was too young to understand the first time (and only) time I had issues, I couldn’t answer a lot of questions my new doctor was asking.

My doctor had said that she saw new spots in my right eye and advised that she treat me immediately with laser.  I went to the appointment alone and suddenly felt so afraid, thinking, how would I get home? How would I go to work? Will this even help? Should I tell my family or would it worry them? Would this be covered by my insurance?

I ended up calling my husband in a panic and before he could get there, I was sitting very still in a chair getting treatment. Laser is no joke. It takes a few minutes, and blinking, moving, or twitching could instantly cause blindness if the laser hits the wrong spot.

Since then, my eyes have gotten worse. In the past couple of years, doctors have noticed new spots in my left eye, this time closer to the center of my vision. Since laser results in scaring, my doctor decided to treat me with eye injections.

I have received shots in both of my eyes (sometimes at the same time), every 4-6 weeks for 3 years.

Let’s talk about the emotions that go along with having a disease that can come and go at any given moment with no cure in line for the future... it’s rough. The first year it came back since I was young, I couldn’t enter the doctor’s office without immediately crying.

I typically went to these appointments by myself, and I was too emotional to ask the hard questions like “how bad is this, really...” I didn’t want to talk to my family or friends about it because it was too emotional and I didn’t want anyone to worry about me. It was a very lonely feeling not knowing anyone else with this kind of disease and then, not talking to anyone about it.

On top of worrying about other people’s feelings, I constantly thought about how my life would change if I did become blind. Would I go blind before or after my kids were born? Would I be able to see them grow up? What’s the point of living if I can’t see all of the beauty in the world? Would I need to learn Braille? How would I get to work if I were blind?

Having this disease is so taxing because there is no cure and there is little that can be done to prevent it from happening. Even though I currently have 20/20 vision, I can tell that I’m losing areas in my vision. It’s like when you are looking at a Jumbo Tron and one of the light bulbs is out, you can still see the image, but there is a spot in the vision completely missing. Eventually, all of the light bulbs in my vision could burn out.

Seeing the bright side:

As mentioned, at first it was tough, but slowly, I started talking more about it and thinking about what my life would be like if the worst happened. I started thanking God every morning for giving me eyesight when I opened my eyes (I used to have nightmares of waking up blind), and I started appreciating the time I have with my vision.

Everyone has issues that they need to deal with in life, this is mine. I think the way people handle their problems results in whether they allow it to make or break them. I’ve also learned that it’s much easier to overcome things when you have a strong support system.

My attitude has completely changed. I’m able to talk about it and accept that it’s just a part of my life, my story."

Hear the song inspired by their story: COMING SOON!

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