In March of 2015, I contracted a serious, debilitating eye disease named Acanthamoeba keratitis simply from showering with my contact lenses in, something I have done hundreds of times over the past two decades.
It started with the sensation that something was in my eye, a sort of gritty feeling that wouldn’t go away. Then, I noticed as I was driving that the light was bothering me and tears were streaming down my face. Before I knew it, my eye was red, swollen and excruciatingly painful, so much so that I became bedridden in a darkened room for the next two and a half months. I lost all the vision in my left eye, which I could not even open. My retired mother moved in with my family as I was too weak to care for my three daughters.
According to the Centers for Disease Control and Prevention (CDC) Acanthamoeba keratitis (AK) is a rare but serious infection of the eye that can result in permanent visual impairment or blindness. This infection is caused by a microscopic, free-living ameba (single-celled living organism) called Acanthamoeba.
Acanthamoeba causes Acanthamoeba keratitis when it infects the transparent outer covering of the eye called the cornea. Acanthamoeba amebas are very common in nature and can be found in bodies of water (for example, lakes and oceans), soil, and air. In the United States, it is estimated that 85 to 90 percent of the people who contract AK are contact lens users.
I couldn’t believe this information. I disinfected my lens each night in a hydrogen peroxide solution, changed my contacts out every two weeks and never slept in them. I knew not to use tap water to clean them. I was a responsible 42 year old mother that wore contacts for the past 20 years, not a young teen. How could this happen to me?
Unfortunately, like most lens users, I did not the whole story. Factors and activities that increase the risk of contracting Acanthamoeba keratitis include using contaminated tap or well water on contact lenses, using tap water or homemade solutions to store and clean contacts, or using your own saliva to moisten your contacts.
But since acanthamoeba can live in almost any water environment, wearing contact lenses in a hot tub or pool, swimming in lakes or rivers, or even showering while wearing lenses significantly increases your risk of contracting the disease. This is most likely how I contracted it.
I was extremely distressed when I saw how little information is available for people who receive an AK diagnosis. My lifeline was a Facebook group of fellow patients. When I joined the group in April, there were 398 members. Now, the group is over 500. Cases of the disease are rising, possibly in part due to new water standards.
If you think you may have AK, please see a board-certified ophthalmologist immediately. Here is an article I wrote that appeared in Chicago Now that provides basic information.
Some other good resources include: