When Whitney Fleming, a writer in Grand Rapids, Mich., woke up to find her left eye sore and irritated, she wasn’t initially worried. Fleming had been wearing soft contact lenses since her teens; she cleaned them diligently, replaced them with a fresh pair every two weeks, and never wore them to sleep.
But as the pain grew steadily worse, and none of the treatments she was prescribed seemed to work, Fleming started to panic. She couldn’t drive. Exposure to light was excruciating. The pain, which was unrelenting, radiated into her face and neck, and she eventually lost the vision in her left eye. “I was really just starting to detach from life, because I was in such a lot of pain,” she recalls.
Finally, three weeks later, a corneal specialist diagnosed Fleming with Acanthamoeba keratitis, a disease that occurs when Acanthamoeba—a common parasite found in tap water, as well as dirt, soil, and any non-sterile body of water, like a pool or lake—infects the cornea, the clear outer covering of the eye. Though she’ll never know for sure how she got it, the most likely cause, Fleming’s doctor told her, was something millions of people do every day: wearing contact lenses in the shower.
The risks of wearing your contacts to shower
“We tell people contact lenses and water just don’t mix,” says Dr. Thomas Steinemann, a spokesperson for the American Academy of Ophthalmology and a professor of ophthalmology at Case Western Reserve University in Cleveland.
About 90% of Acanthamoeba keratitis cases occur in contact lens wearers, says Dr. Saba Al-Hashimi, an assistant professor of ophthalmology in the cornea division at UCLA’s Stein Eye Institute. While the amoeba is essentially inert if you swallow it or get it in your ears, “if it gets underneath your contact lens, then it can find a way to become an opportunistic infection,” he says.
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That happens for several reasons. First, the parasite, which has a high affinity for contact lenses, gets trapped between your contact and your cornea, he says. Because the surface of the cornea contains multiple tiny microabrasions from your contact rubbing against it, these can function as openings for the amoeba to infiltrate—and the longer you’re exposed to it, the further in it can burrow.
“Once it’s in there, it’s extremely difficult—the deeper it goes—to eradicate it,” Steinemann says.
An under-recognized disease
Despite wearing contacts for decades, Fleming had never heard that she shouldn’t shower—or swim or take a dip in a hot tub—while wearing them.
“A lot of people don’t understand that any water contact is a hazard,” Steinemann says. “They say, ‘I never knew about this, why didn’t they tell me this years ago?’”
While Acanthamoeba keratitis has historically been regarded as rare, with only around 1,500 cases a year in the U.S., “I think people are gradually realizing that a lot of these infections fly under the radar,” Steinemann says. The disease is often mistaken for other conditions, which can delay proper treatment.
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“A lot of the time it’s misdiagnosed as herpes, and patients are placed on steroid drops, which just makes the infection worse,” Al-Hashimi says. Even when a correct diagnosis is eventually made, “it takes at least three to four months to clear the infection,” he says. “But there are cases where even after a year of treatment, the parasite persists. It’s an extremely hard pathogen to get rid of.”
If you’re displaying symptoms of Acanthamoeba keratitis—including eye pain, wateriness or redness, and light sensitivity—it’s crucial to advocate for yourself at your appointment, Fleming says. “A lot of optometrists and ophthalmologists have never seen a live case,” she says. Steinemann, who trains ophthalmology residents, stresses that eye-care professionals should be primed to catch it. “The sooner we think about it, when we see a patient with a red, painful eye, the sooner we can intervene and get it treated.”
How to mitigate your risk
Acanthamoeba isn’t the only waterborne bacteria that can wreak havoc if it sticks to the surface of your contact lens. “Probably the most common and most feared” is Pseudomonas aeruginosa, which can cause a severe infection of the cornea, Steinemann says.
While there’s a risk with any type of contact lens, “I tell all my patients, if you wear soft lenses, wear single-use daily disposable contacts,” says Steinemann. As well as lowering the risk of contamination—you start with a fresh pair every day—it makes it easier to discard your lenses if you accidentally expose them to water. “It’s not as good as not exposing it to the water, but if you’re wearing a single-use daily lens, let that be the last wear,” he says.
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With other types of contacts, make sure you’re scrupulous with cleaning and disinfecting, Steinemann advises. Don’t reuse contact lens solution that’s been sitting in your case; clean the case with fresh solution at least once a week and leave it open to air dry; and never use tap water or saliva as a wetting agent. (Pseudomonas can also live in your mouth.)
It can be helpful to invest in prescription goggles for swimming, Al-Hashimi says, so you can leave your contacts out altogether; you could even wear the goggles in the shower. And if you’re a candidate for refractive surgery like LASIK, he adds, “that’s one way to get rid of your contact lenses and get to live your life the way you want to live it.”
“A roll of the dice”
Now, almost a decade later, Fleming has slowly regained vision in her left eye, though she still has a scar over the pupil. But in addition to the primary side effects of her infection, she also developed a stomach ulcer from taking high doses of ibuprofen during that time, cracked four teeth from grinding them in pain, and says her mental health suffered during and after her illness.
“If I would’ve understood what could have happened, I would have been much more cautious,” she says. “It’s a roll of the dice that you do not want to do.”
When it comes to showering in your contacts, prevention, stresses Steinemann, is key.
“I think there are plenty of people who are not familiar with this, or they may have heard about it and think, ‘Oh, it’s just a few minutes to shower, that’s no big deal,’” he says. “But if we can avoid the problem altogether, let’s do that.”
