When Whitney Fleming, a writer from Grand Rapids, Michigan, woke up to find that her left eye was sore and irritated, she wasn’t initially worried. Fleming had worn soft contact lenses since he was a teenager; she cleaned them diligently, replaced them with a new pair every two weeks, and never wore them to sleep.
But as the pain continued to get worse and none of the treatments he was prescribed seemed to be working, Fleming began to panic. She couldn’t drive. The exposure to light was excruciating. The unrelenting pain radiated to her face and neck, and she eventually lost vision in her left eye. “I was just starting to detach myself from life, because I was in so much pain,” she recalls.
Finally, three weeks later, a cornea specialist diagnosed Fleming 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, such as a swimming pool or lake—infects the cornea, the transparent outer layer of the eye. Although she will never know for sure how she contracted 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 contact lenses when showering
“We tell people that contact lenses and water just don’t mix well,” says Dr. Thomas Steinemann, a spokesperson for the American Academy of Ophthalmology and professor of ophthalmology at Case Western Reserve University in Cleveland.
About 90% of Acanthamoeba Cases of keratitis occur in contact lens wearers, says Dr. Saba Al-Hashimi, assistant professor of ophthalmology in the cornea division of the Stein Eye Institute at UCLA. While the amoeba is essentially inert if you swallow it or put it in your ears, “if it gets under your contact lenses, then it can become an opportunistic infection,” he says.
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This happens for several reasons. First, the parasite, which has a high affinity for contact lenses, gets trapped between your contact lenses and your cornea, he explains. 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 are exposed to them, the deeper it can burrow.
“Once it’s there, it’s extremely difficult – the deeper it goes – to eradicate it,” says Steinemann.
An underestimated disease
Even though she had worn contact lenses for decades, Fleming had never heard that she shouldn’t shower, swim, or bathe in a hot tub while wearing them.
“Many people don’t understand that any contact with water is dangerous,” says Steinemann. “They say, ‘I’ve never heard of it, why didn’t they tell me years ago?'”
While Acanthamoeba Keratitis has historically been considered rare, with only about 1,500 cases per year in the United States. “I think people are gradually realizing that a lot of these infections go unnoticed,” says Steinemann. The disease is often confused with other conditions, which can delay proper treatment.
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“Most of the time, it is misdiagnosed as herpes, and patients are put on steroid drops, which only makes the infection worse,” says Al-Hashimi. Even when a correct diagnosis is finally 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 is an extremely difficult pathogen to eliminate.”
If you have symptoms of Acanthamoeba Keratitis — including eye pain, tearing or redness, and sensitivity to light — is essential to advocate for yourself at your appointment, says Fleming. “A lot of optometrists and ophthalmologists have never seen a real case,” she says. Steinemann, who trains ophthalmology residents, emphasizes that eyecare professionals need to be prepared 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 treat them. »
How to mitigate your risk
Acanthamoeba is not the only waterborne bacteria that can wreak havoc if it sticks to the surface of your contact lenses. “Probably the most common and feared” is Pseudomonas aeruginosawhich can cause a serious infection of the cornea, explains Steinemann.
Although there is a risk with any type of contact lens, “I tell all of my patients that if you wear soft lenses, wear single-use, daily disposable lenses,” says Steinemann. In addition to reducing the risk of contamination (you start with a new pair every day), it’s easier to throw away your lenses if you accidentally expose them to water. “It’s not as good as not expose it to water, but if you wear a single-use daily lens, let it be the last time,” he says.
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With other types of contact, be sure to be scrupulous about cleaning and disinfection, advises Steinemann. Do not reuse the contact lens solution in your case; clean the case with fresh solution at least once a week and let it 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 swimming goggles, says Al-Hashimi, so you can ditch your contact lenses altogether; you can even wear the glasses in the shower. And if you’re a candidate for refractive surgery like LASIK, he adds, “it’s a way to get rid of your contact lenses and live your life the way you want.”
“A roll of the dice”
Now, nearly a decade later, Fleming has slowly regained vision in her left eye, although she still has a scar above the pupil. But in addition to the major side effects of her infection, she also developed a stomach ulcer due to taking high doses of ibuprofen during this time, she broke four teeth while grinding them in pain and says her mental health suffered during and after her illness.
“If I had understood what could have happened, I would have been a lot more careful,” she says. “That’s a roll of the dice you don’t want to make.”
When it comes to showering your contact lenses, prevention, Steinemann emphasizes, is key.
“I think there are a lot of people who aren’t familiar with it, or maybe have heard about it and think, ‘Oh, it’s just a few minutes to shower, no big deal,'” he says. “But if we can avoid the problem altogether, let’s do it.”
