By: Katie DeRouen

Growing up, I thought I had perfect vision. I didn’t wear glasses or contacts and my doctors never noticed anything problematic with my eyes. However, when I turned 18 and started college, I noticed it was a little difficult to see the board in class. I made an eye appointment to see what was wrong with my vision, and my eye doctor simply gave me a very mild prescription for glasses which didn’t really help. What I was not aware of was that I was actually living with a progressive eye condition, one that some members of my family were already living with.

A family trait

My mom doesn’t remember exactly when she received her official keratoconus diagnosis, she only knows that it was many years ago. Prior to her diagnosis, my mom had poor vision from a very young age and was unable to see without her glasses. After seeing a new doctor in 2018, she learned that while she was still living with keratoconus, the condition was not progressing and therefore, would not require treatment. While she could wear hard contacts, she currently works as a rural mail carrier, and with a dusty mail route, contacts are not ideal, so she relies on her glasses.

My brother, like me, had no vision issues until he was diagnosed with keratoconus in 2010 while he was in his 20s at a routine eye exam. Over time his condition progressed and he had to get a prescription for lenses. As a computer engineer, he is always looking at a screen, which is difficult when you have keratoconus. After receiving cross-linking, he was able to be fitted with scleral lenses. While the lenses are a bit uncomfortable, he said they are worth it because he cannot remember the last time he saw this clearly.

Unexpected reality

In 2013, at the age of 23, I was diagnosed with keratoconus in both of my eyes. The doctor deemed it a mild case and from my perspective, did not seem very concerned about progression. After receiving an accurate diagnosis, I was finally able to receive prescription glasses that helped my vision. I continued to wear glasses and did not seek alternative treatment options. Based on the information this doctor gave me on keratoconus, I was not concerned about progression or the impact the condition would have on my daily life. But, then my vision started to really worsen.

Five years later, I went to see my brother’s physician, and after discussing the benefits and risks of the procedure, he recommended corneal cross-linking to prevent further progression of my keratoconus and preserve my vision. Knowing that there are risks with any procedure, I ultimately decided to delay treatment. I went back in May 2019 and learned that my keratoconus was still progressing, but at a very slow rate, which was a relief to me.

Needing an appointment treatment

As an inpatient coder for a large hospital system, I work on a computer all day long. It is nearly impossible to work without my glasses, and even with glasses, my vision is not perfect. My friends and family often joke about how poor my vision is. I know they mean no harm, but it does get frustrating to constantly hear ‘Wow you can’t see that?’ or ‘Oh, I forgot, you’re blind’. It’s comforting to know that my mom and brother have the same condition and can understand what I’m going through.

My career depends on my vision so I know that I need to take the necessary steps to ensure that my condition doesn’t begin to affect my work. I spend over eight hours a day on the computer and I can get by with my vision as it stands now. However, if my keratoconus continues to progress it could have a very serious impact on my career. I was very scared when both the corneal specialist and the surgeon stressed how much I needed cross-linking.

While I am currently only wearing glasses, which help a great deal, I do know that I need to get the FDA approved cross-linking procedure soon. I initially scheduled my cross-linking treatment for August 2019, but learned that I was pregnant so I put it on hold. Now, I’m planning to schedule the procedure for after I give birth.

Looking toward the future

Knowing keratoconus is genetic, and that I am living with the condition along with my mom and brother, I am concerned that my children may begin to develop this progressive condition. I have a 10-year-old daughter and I am pregnant with my first son. My daughter has never had any vision problems, but neither did I until I turned 18. I worry that she may begin to develop this condition so I will be taking her to annual vision exams and will watch her closely for signs of keratoconus to make sure she receives an early diagnosis and treatment.

For anyone who is currently on a keratoconus journey, I encourage you to seek treatment as early as possible to preserve your vision. Keratoconus can be frustrating, but I’m happy there are people dedicated to raising awareness and educating people on the symptoms and available FDA approved treatment options.

 

Find a Corneal Cross-Linking Specialist Near You

Search the directory to locate a corneal specialist who is familiar with treating progressive keratoconus.

 

 

The results described on this site are based on data collected regarding short-and intermediate-term efficacy of treatment. Individual results are not guaranteed and may vary.

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