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  • Writer's pictureGrace Piera

One girl's story with a rare eye condition

Kat shares her story about battling and raising awareness about keratoconus, a rare eye condition.

Consistently, I was diagnosed with severe eye allergies or severe dry eye. Eventually, I tried to return to school, but could not read my computer screen well, so I took a medical leave to try to improve my vision. Later, we found out that I have keratoconus, a rare eye condition, but it was missed by some of the top eye institutions, like the Wilmer Eye Institute at Johns Hopkins. Sadly, it is a condition that is often unidentified and has no treatment.

The condition is a thinning of the cornea that protrudes out in a cone-like shape. It is thought to be caused by genetic and environmental factors. This makes the eyes unable to filter scattered light. Pinhole glasses can greatly help but are problematic. The eyes are also often sensitive to light and the lighting, reflections, and glare greatly distort things. For instance, in my left eye when a bright light is near my biology text book, I cannot determine if there are letters on the page, but in a different light, I can tell there are illegible letters. My better right eye can read and see the letters in both lighting conditions with little difficulty.

"I aim to share my story to help others if I can find the opportunity to."

Typically, the condition is not noticed until late adolescence and early adulthood. The thinning of the cornea can happen very quickly or slowly. There is no cure for keratoconus; however, cross-linking (a surgery to stabilize the cornea) can halt the progression of the cornea degeneration. This means that if the condition is caught early a person's vision can be saved.

When my condition was unidentified and worsening, I took a medical leave from school and went to different eye doctors every other week where I was misdiagnosed with severe dry eye or an eye infection. I continued to visit eye doctors and finally, I was overjoyed to be diagnosed with keratoconus, because I knew what was causing so much trouble for me.

My family is now helping me find surgeries and specially fitted, custom contact lenses for my condition. I am so thankful for their support. This long medical journey has been expensive and is not yet over. I aim to share my story to help others if I can find the opportunity to. I learned that keratoconus is an eye condition that is often missed, and that there are not a lot of treatment options for keratoconus due to lack of funding and research. Now, it has become my goal to raise awareness about keratoconus. Consider donating to institutions dedicated to keratoconus treatment and research.


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