Acanthamoeba Keratitis Awareness

On Saturday, December 21, 2024, I, Jackie Albrecht, tried to open my left eye and failed. My eye was extremely painful to open and crusted shut. I unpleasantly spent my winter vacation in doctor offices and waiting rooms trying to determine what was wrong. Within 14 days, I urgently visited 10 doctors across urgent care centers, ophthalmologists and cornea specialists, resulting in the ultimate diagnosis of Acanthamoeba Keratitis (AK).

My journey revealed the difficulty in diagnosing AK. As a daily contact wearer, I was quizzed about my contact hygiene maintenance. I did not sleep in my contacts, but I occasionally swam and showered in them. Initially, it was identified as pink eye and I was given Ofloxacin. I felt relieved that it was only pink eye. Yet, my pain was agonizing and persisted through the night, causing a lack of sleep. It hurt to look at sunlight, lights, the TV and my phone. My house was covered in darkness, as all the lights were off, and I wore sunglasses around the house. My light sensitivity and extreme pain worried me and my family. The next day, I visited a different urgent care in hopes of better answers. I was given Gatifloxen for a cornea abrasion. The doctor advocated for me to see an ophthalmologist within the next 24 hours. My symptoms drastically increased.

At my local ophthalmologist, they diagnosed me with a cornea ulcer and prescribed a steroid. They also discovered increased swelling around my cornea. I scheduled a follow-up appointment two days later.

At my checkup appointment, a second ophthalmologist realized that my left eye had considerably deteriorated and identified an unexplainable ring. They insisted I see a cornea specialist immediately. That same day, we waited at the University of Illinois Chicago (UIC) walk-in clinic for six hours, but did not receive any new information. Thankfully, the gracious team at my local ophthalmologist called in a favor to schedule an appointment with Dr. Randy Epstein for the next day. Scheduling emergency appointments was especially difficult given the holidays, as most doctors were already on vacation. At this point, with my sixth doctor, I was grumpy, still in pain and tired of waiting – yet, I still needed answers. I was happy to be seen by a cornea specialist, Dr. Epstein. As a precautionary measure, he administered a polymerase chain reaction (PCR) test, which involved scraping my affected cornea for a sample. Not fun! I worried about the results. On my third visit with Dr. Epstein’s team, I received a positive diagnosis of Acanthamoeba Keratitis from the PCR test. Immediately, I was confused and did not understand what was happening. I thought that the doctors were making a bigger deal out of the diagnosis than necessary. I quickly learned this was not the case. I had a parasite growing in my left eye that could lead to severe consequences – including vision loss, and even blindness.

I instantly transferred to Dr. Elmer Tu at UIC, where he closely monitored my case frequently for several days, then weeks and then months. I felt lucky to live in Chicago and have access to Dr. Tu, who some considered the best in the U.S. for AK. Initially, I was prescribed 0.08% PHMB hourly for several days. I will never forget my parents waking me up hourly during the night to administer these painful eye drops, which some likened to chlorine. It felt like my eye was burning each time the droplet landed. Although I knew it was necessary, I hated taking this medication. I tried everything I could to reduce the pain, including ice packs, which provided temporary relief. Eventually, I slowed the occurrence of these PHMB eye drops.