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About

Hi, my name is Alex, and I built this site to share my experience with keratoconus. It has been a tough journey at times, but there are a lot of resources available.

My experience with KC

I thought the eye test machine at the DMV was broken. But it turned out that I was pretty lucky the state subsequently insisted I get an eye exam.

My diagnosis was shocking to me but also clarifying. Many separate experiences, from frequent headaches to a car accident at night years ago suddenly made a little more sense. But acceptance of my diagnosis came in stages. At times, it felt like I was glad I caught it “in time”, at other times panicked about what I was about to face. And sometimes I felt total rage at myself for not having my vision checked more thoroughly sooner.

Prior to my diagnosis at 28, I really needed glasses for years. But there’s nothing I can do about that lost time, and beating myself up is not beneficial. But it can be hard to resist that temptation sometimes.

Even though my journey hasn’t been the smoothest, I think keratoconus has ultimately led me to bring a renewed sense of motivation and aspirational excellence to my software engineering and data science work. I started to more consciously prioritize user empathy and accessibility in my applications.

Although it’s not a cure for keratoconus (opens in new tab), I’m very thankful that corneal crosslinking has been able to stabilize my vision.

Why I built this

  1. You might not have known about keratoconus before seeing this, but it can quietly cause vision loss for years before being diagnosed.
  2. A keratoconus diagnosis is a new start, not the end of your life. While I can’t promise everything will be cheap and easy, treatment options and knowledge of your condition can make things manageable.
  3. I think keratoconus serves as a example of how narrowly our world and society are designed. Are you supposed to be a second-class citizen by default if you have trouble seeing and driving at night? That’s the reality in many parts of the US

Follow me or get in touch

Follow me on Bluesky (opens in new tab) to keep up or get in touch via DMs

I also welcome you to check out my personal blog (opens in new tab) if you are interested in my software and data projects!