Can parasites invade your tween's eye? What you need to know about Acanthamoeba keratitis

Can parasites invade your tween's eye? What you need to know about Acanthamoeba keratitis

Today I'm taking my tween to the opthamologist for her annual vision check. I allowed her to get contacts and while she's loving them, I've always been concerned about her taking proper care and precautions when it comes to caring for her eyes, especially with contacts.

My caution came in part from having a family friend who contracts Acanthamoeba keratitis, an infection that is the result of a parasite coming into contact with the eye. It was very scary, but it is rare. I was very surprised, however, when fellow blogger and tween mom, Whitney Fleming of Playdates on Fridays, contracted it earlier this year.

Thankfully, she is on the mend and I have I asked her to share her experience in this guest blog so that other parents and kids can learn from her experience, because this awful disease is preventable.


More tweens than ever are turning to contact lenses to enhance their vision. Children as young as seven use them for sports or to avoid wearing glasses due to self-esteem or vanity reasons.

While contact lenses can be a safe way to improve your child’s vision, they are not without risk. Simple care mistakes can cause vision-threatening consequence.

I know this because I contracted a serious, debilitating disease simply from showering with my lenses in, something I have done hundreds of times over the past two decades.  I began wearing contacts at age 18.

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 only solace was sleep.

As a 42-year-old mother of three tween daughters, I barely made it through this harrowing ordeal. The only thing more heart wrenching would be if it happened to one of my kids.

What causes these debilitating symptoms?

Microscopic organisms named Acanthamoeba, which are commonly found in bodies of water such as lakes, rivers and oceans, as well as domestic sources such as tap water, swimming pools and hot tubs. Humans are exposed to these free-standing amoebas constantly without harm, unless you are a contact lens user, which puts you at risk for contracting Acanthamoeba keratitis. (AK).

AK is an infection of the cornea, the clear outer covering of the eye. In the United States, 85 to 90 percent of people who contract the disease are contact lenses wearers.

When the parasites come in contact with the eye, they slide under the lens and start feeding off bacteria on the lens or your cornea. The lens basically “traps” the organisms on your eye, reducing the opportunity to excrete it through tears. The parasite then embeds itself into the cornea tissue and begins to repopulate, basically using the eye as its playground.

Doctors do not know why some people contract AK, and others do not. The common denominator is exposure through water while wearing lenses, usually through swimming or showering, rinsing or storing lenses in tap water, or even handling lenses with wet hands. Poor contact lens hygiene, such as failing to disinfect lenses properly or change the case regularly also increase the risk of infection.  This means overseeing your tweens cleaning and care regimen is extremely important — it’s not merely like asking if they brushed their teeth.

Since the cornea is one of the most sensitive organs with the highest density of pain receptors in your body, AK can be extremely painful. The infection also may trigger an immune response by sending white blood cells to the eye that can increase the pain and redness. These factors can alter the shape of the cornea which impacts vision.

AK is rare, but it is on the rise.

Some scientists are hypothesizing that changes in U.S. Environmental Protection Agency regulations aimed at reducing carcinogenic products in the water supply may have inadvertently boosted the likelihood of finding Acanthamoeba in tap water. Certain disinfectants have also been linked to increased AK outbreaks.

Because it is rare, many ophthalmologists have never seen a live case walk through the door. AK often presents similarly to other bacterial infections, so misdiagnoses are prevalent. Even when diagnosed properly, many physicians are not familiar with the medications or protocols for treating the disease.

There are currently no medications approved for the treatment of AK in any country, which means the pharmaceuticals are used off-script. Like shocking a pool with a large amount of chlorine, most doctors use a combination of antiseptic drops proved to kill the amoebas and create an inhospitable environment for the organisms. In the beginning, drops are used hourly, even through the night, which can be an exhausting experience. Most doctors then use a regimen that weans the patient slowly off the drops to reduce the chance of a relapse.

Sometimes the medicinal cure is as damaging as the disease. The drops are harsh and often cause discomfort or vision impairment.

Although each case is different, patients diagnosed quickly can expect treatment to last between four to six months. For many others, treatment can last more than a year and include additional ailments such as cataracts or glaucoma.

What makes the disease even more difficult to treat is the parasites live in two stages: active trophozoites and hard-shelled cysts that lie dormant in the eye. While current medications often kill the living parasites, cysts can survive in the eye for up to two months and are difficult to eliminate, particularly if they are deep in the cornea where the drops may not reach.  This means there is a high incidence of recurrence, so most doctors taper patients off the medication over several months.

AK also can have long-term impacts on vision.

While most patients either lose or have significantly reduced vision in their infected eye due to swelling, vision often improves as the infection responds to treatment. In the later stages of the disease, scarring from defects and inflammation is usually the reason for vision loss.

Most people need some sort of further therapy, such as hard lenses, laser therapy or a cornea transplant, to regain vision, while some can either use glasses or their previous contact prescription, although it is recommended that dailies be used to reduce the risk of AK.

When first diagnosed, my doctor told me that this is not a typical eye infection.

It is a disease that is mentally and physically difficult. My journey consisted of two ER visits, including being admitted for three days for gastritis due to an adverse reaction to pain medication; losing all the vision in my eye for three months; contracting a secondary bacterial eye infection, and depression.

Nearly four and a half months after my first symptoms appeared, I still administer drops in my eye daily and have a scar covering a portion of my pupil that impacts my vision.

In a Google search, I came across a Facebook group of AK patients that has been my lifeline. Because information about the disease is limited, understanding that the depth of my pain and light sensitivity were normal brought a level of peace and understanding that the doctor could not offer.

What is most heart wrenching, however, is when a parent joins our group because their child has contracted AK. Often, their child misses out on important milestones such as prom, homecoming or school trips. In one case, a young boy missed his entire junior year.

I worry about tweens who often do not have the cerebral development to fully understand risk.

Young people who have spontaneous sleepovers and put their contacts in tap water because they do not have their container and solutions handy. Kids who sleep in their contacts or dab them with water from a sink to moisten them. Children who swim and shower in their lenses because they are too lazy to take them out.

AK has changed me, and I struggle with managing my fear. Fear of a relapse, fear of the pain,  and mostly, fear of losing my life again.

I still believe that contact lenses are a viable option to improve vision, but as one parent to another, I want to ensure that no one — especially a child — has to suffer through this awful, preventable disease.

While AK is scary, contact lens wearers can reduce the risk of all infections by following these guidelines:

+  Remove lens before any activity involving water, including showers. If you must wear lenses, use daily disposables.

+  Never re-use or top-off cleaning solution. Use fresh solution each time you clean or store your lens.

+  Never moisten your lenses with saliva or tap water.

+ Store reusable lenses in the proper storage case. Storage cases should be rubbed and rinsed with sterile contact lens solution (never use tap water), emptied, and left open to dry after each use.

+ Storage cases should be changed every month.

+ Do not sleep in your lenses. Do not wear your lenses longer than prescribed.

+ Contact your eye care provider immediately if you have any of the following symptoms: Eye pain or redness, blurred vision, light sensitivity, sensation of something in the eye or a gritty feeling, excessive tearing.

You can find Whitney at Playdates on Fridays and on Facebook. I'm very grateful that she's on the mend and sharing her experience so that others can be spared. I'm off now to go get a new contact case!

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