Cally Ingram Rundus is one of our valued charity supporters walking Eye to Eye with us this year, who is raising awareness of Acanthamoeba keratitis (AK) after being diagnosed with the serious eye disease.
Cally told us her story:
In 2014, I was diagnosed with Acanthamoeba keratitis . It was a very scary time for me, during which I wasn't certain if my eyesight would ever return to normal or even if I might go blind or possibly lose my eye. In addition to that fear and uncertainty, it was also extremely physically painful. I would spend most of my time indoors, wearing an eyepatch, laying on the pillow, and sleeping off the pain. With all of the pain and worry came a lot of depression. To put it simply, it wasn't an easy time for me.
For those not familair with AK, it is a rare and serious disease of the eye that can cause permanent visual impairment, including blindness. The infection is caused by a microscopic, free-living amoeba called Acanthamoeba; and while the disease itself is rare, the free-living microscopic amoeba is quite common in nature and can be found in bodies of water (fresh, salt, and tap), soil, and even air. In the United Kingdom (which is where I was living at the time that I contracted AK), incidence is much higher than in the United States and other parts of the world, with studies suggesting that AK affects one out of every 50,000 contact lens wearers per year. Like 85% or more of individuals who contract AK, I was a contact lens wearer. Contact lens wearers are more susceptible to the disease, as the contacts tend to produce small minor scratches on the surface of the cornea, thereby increasing susceptibility for the amoeba to attach itself to the opening of the eye's surface. However, while most people with AK wear lenses, cases have also been reported by those who do not wear lenses. Once the cornea becomes infected with the Acanthamoeba, the amoebas physically begin to eat away at the eye (specifically the cornea's epithelium). AK is a very serious, painful, and sight-threatening infection that can be extremely difficult to treat medically and therefore is not a universal solution or treatment plan. For each individual, every case is different. In order to remove the the infection, some individuals have to undergo a cornea transplant, or have their eye extracted, and suffer blindness of the affected eye.
In my case, I was one of the lucky ones. I responded extremely well to an experimental treatment of eye drops, on a strict-sleep depriving schedule that lasted for about half of a year. I did not lose my sight, or have a cornea transplant, or have an eye extracted. My eye did not sag or shrink (often a side effect from the medication), but returned to a healthy eyeball which minimal scaring. However, I know that many who have been diagnosed with the disease are not so lucky.
Treatment often goes undiagnosed by ophthalmologists and optometrists for months. For me, my symptoms had been going on for several weeks, and I went from eye doctor to eye doctor demanding an answer. I explained to each doctor, that "it's not an eye infection, something is wrong!" It wasn't until I was referred to Moorfields Eye Hospital, that I was finally properly diagnosed. I was diagnosed in under a few hours and treatment began the very same day. At Moorfields, I received the proper treatment, medication, and care that AK requires. I received support from staff and colleagues who were extremely responsive and sympathetic to the emotional roller coaster AK had taken me on. They understood and today, I feel very fortunate and extremely thankful that I still have my sight. There is not a day that goes by that I am not thankful. I credit this success to Moorfields.
On Sunday, March 10, 2019, I am walking 14 miles to raise awareness for AK through Moorfields Eye Charity. I am walking to raise awareness for AK and to help people learn that for those who wear contact lenses, water and contacts should never mix.
I am also walking to cheer on those who are currently suffering from AK, by letting them know, "I'm with you, I support you, and I know what you're going through." I am walking for those like me who were fortunate enough to have recovered, who have "been there and have done that" and have lived through it to talk about.
Finally, I am walking for Moorfields Eye Charity - thank you, thank you, thank you. Words can't express my gratitude for the help and care that I received.
On a side note, I’m not the only one who is grateful for my whole experience. My husband, Drew Rundus, is also running for Moorfields Eye Charity, by participating in the London Big Half Marathon on the very same day that I am walking. While we may be doing separate events, we’re doing this together.
At the time that I had AK I was extremely depressed, and about four months into treatment, I thought it was time that I go out and live a little. With that thought in mind, I wound up creating an online profile to go out on a few dates. Drew was the first person I went out with and the only person I went out with. We laugh about it to this day that if it weren’t for AK we may not have ever met.
Truly wonderful things can come out of awful circumstances.