In the worst cases, AK can lead to permanent blindness or eye loss.
Here is Leaths story as told to writer Michelle Vartan.
In the summer of 2022, I was in Florida visiting Disney World for a few days.
Courtesy of Emily Leath
I took a shower one evening, as one does.
The next morning I woke up withpainin my left eye.
But two days later, my symptoms were worse.
I became sensitive to light, had to wearsunglasses, and stayed in a dark room.
Even though I was doing eye drops every hour my pain somehow was ramping up.
I then went to a corneal specialist, which was actually a terrible experience.
The doctor scraped my cornea to do a culture and see what was attacking my eye.
You cant imagine the pain.
I was bawling when she said to me, you oughta stop crying.
Youre acting like an adult baby.
I will never, ever forget it.
It was so invalidating.
I asked to see another specialist.
This new person, who was much warmer, came in and diagnosed me withacanthamoeba keratitis(AK).
(And Im so glad I spoke up and asked for alternative care!)
I left the clinic upset and confused.
I didnt know what this condition was or what to think.
Based on what I read, I completely panicked.
All I could think was, Oh my God, Im going to lose my eye.
It was the scariest feeling, especially because I already haveanxiety.
I was prescribed an eye drop called chlorhexidine, which I had to use every hour.
Days later, my eye was increasingly puffy and red, and somehow even more painful.
I was on so much medication that I had a stack of papers with lists and schedules.
I had to do eye drops every hour and wasnt getting much sleep.
I was so tired and [drained] of my alarm going off.
At the time, I was in a nurse practitioner program.
I continued taking classes because it gave me the motivation to keep going, but it was difficult.
I was in the dark for six months, both literally and figuratively.
I struggled with depression before this happened, so this was especially hard.
I didnt think the pain could get worse until one day in December.
I was actually laying in bed screaming it was so painful.
It felt like it was an actual living nightmare.
I decided to move forward with a corneal transplant.
I was proud of myself for fighting the good fight for as long as I did.
It was so hard that the eye surgery no longer felt scary; it was necessary.
A corneal transplant is where they replace your own cornea with one from a donor.
For pre- and post-care, I had to go on an antiparasitic IV medication calledpentamidine.
Its similar to chemotherapy in that it makes you very nauseous; I was constantly throwing up.
I didnt recognize myself in the mirror.
I got the transplant in January and went home to recover.
The pain subsided but I was devastated when it was only temporary.
One day, the same familiar stabbing pain was back.
This is when the conversation with my doctor got really scary.
He told me the infection may have spread into my sclera, the white part of your eye.
This is rare, but with my track record, of course it happened.
At that point my options were to do one more transplant.
If that didnt work, he told me theyd have to remove my eye.
My heart dropped into my stomach.
It was the worst feeling I had ever experienced.
I began to look up prosthetic eyes in an effort to accept a terrible reality.
In February, I went in for the second transplant.
Youd think the relief would be overwhelming but I could only feel more angst.
I was afraid to start living again because I was waiting for the other shoe to drop.
I was constantly monitoring my pain.
I was terrified of watera sprinkler would go on and I would freak out.
I even showered with my goggles on.
I was anxious, worried, anddepressed.
I religiously continued to take my medication, which thankfully was a lot less post-transplant.
It took time for the dread to fade.
I remember my first outing was in late March, almost a year later after my original diagnosis.
Today, Im a different person physically and mentally.
Not surprisingly, I mostly wear eyeglasses.
you might tell theres something going on with my left eye; it doesnt quite match my right one.
It kind of looks like I have a blue eye.
I now see a therapist who specializes in people with chronic health conditions and they increased my anti-anxiety meds.
I am in a much better place than I was a few years ago.
I am now at the point where I dont feel like I have to wear goggles in the shower.
and to me, that is a victory.
I wanted people to shift that mentality so Iturned to TikTok to tell my story.
Its so important that contact wearers know about this condition.
I hope that maybe I can save a couple of people a couple of eyes.
So just, dont use tap water for your contact lens solution.
