One day, her eye became red and painful. At first, she thought it was just a minor irritation. The family doctor prescribed eye drops, but it only got worse. “I couldn’t stand the light anymore. The pain became unbearable. I was writhing on the floor. I was given different eye drops, but nothing helped.” After three weeks, the doctor sent Marga to the hospital. At Amsterdam UMC, it turned out that her cornea was severely inflamed. The doctors took a culture and diagnosed acanthamoeba keratitis (see box). “All I could see was a thick gray fog. The doctor said, ‘You must be in so much pain.’ It was such a relief that someone acknowledged I wasn’t just making it up. Those parasites were gnawing at the nerve fibers in my eye. I had pain in my temples, in my ears, and a constant headache. I couldn’t stand any noise. My world was shrinking. I couldn’t do anything anymore—just lie there with my eyes closed or look down. I was also very afraid that the parasite would spread to my other eye.”
Tough months
The doctors did everything they could to save her eye. She was given a lot of medication and had to use eye drops 24 hours a day. This meant she could barely sleep. But the parasite was persistent. She lost her independence and became dependent on her husband. “We told each other: we’ll get through this together. But it was tough. The uncertainty, the pain, the lack of energy… all of it together wore me down.” After seven months, the bad news came: the parasite was breaking through the eye. There was no other option left. Her eye had to be removed.
Farewell to Her Eye
“Evisceration. I didn’t know that word. But it meant that the contents of my eye were being removed. The next day, I was lying on the operating table. After the surgery, Marga felt something strange: relief. “The pain was gone. It felt like a liberation. Despite the sadness, I was on cloud nine. In hindsight, maybe I stuck with the medication for too long. The option of eye removal had come up before. But I really didn’t want that. I was afraid of what it would look like.”
Even more surgeries needed
But the battle wasn’t over yet. It turned out the parasite hadn’t been eradicated after all. Within a week, the wires were hanging there again. She needed another surgery. That was a heavy blow. “I was exhausted—mentally and physically. When I looked at my face in the mirror, I felt disfigured. They had to remove my entire eye socket because everything had been affected by the parasite.” Because the doctors wanted to be absolutely sure the parasite was truly gone, Marga had to wait six months before she could receive an ocular prosthesis. That’s because the Acanthamoeba’s eggs can still hatch six months later. All that time, I walked around with my glasses taped over or wearing an eye patch. Fortunately, after that, the eye socket could be filled with fat harvested from my buttock. I wasn’t allowed to have an implant, because there was a high risk that my body would reject it.”
The body’s own fat did gradually settle a little deeper, which made the difference between that eye and the healthy one more pronounced. “I now get fillers injected every six months. It works very well. I’m happy with the results.”
Looking Ahead Again
During her recovery, Marga received help from the Koninklijke Visio rehabilitation center. “They really understood me there. That gave me strength.” Eventually, Marga received a beautiful artificial eye. “People don’t notice the difference. I feel like myself again. Life is different, but it’s certainly not over.”
She does notice that she gets tired more quickly now. And that she has a blind spot. “But I’m back to biking and driving with a blind-spot mirror. At the supermarket, I sometimes bump into someone. Then I say, ‘Sorry, you were in my blind spot!’” It’s an invisible disability. Marga looks to the future with confidence. She knows how hard it was, but she also knows she’s stronger than she thought. “Life with one eye is different. But it’s good. I survived, I’m alive, and I’m smiling again.”
Happy with OOG in OOG
Marga: “I’m so happy with the OOG in OOG Association. It’s been great to be able to share my fears with others going through the same thing and ask them my questions. Now I try to do the same for others. Every year, I go to the National Contact Day with my husband, Ruud. It’s wonderful to take a moment each year to reflect on everything that has happened to me. What a difference a day like that makes! I’m still thinking about it for a few days afterward, and then it fades away again. It’s wonderful to meet those kind, beautiful, strong people at the association.”
Box: What Is Acanthamoeba Keratitis?
Acanthamoeba keratitis is a rare but serious corneal infection. The outer layer of your eye becomes inflamed due to a tiny, invisible parasite (Acanthamoeba). This tiny organism is found in water—whether in oceans and lakes or even in tap water. Acanthamoeba keratitis affects 30 to 40 people in the Netherlands each year.
This inflammation of the cornea mainly affects contact lens wearers, because the parasite settles under the lens. However, anyone with even minor damage to the cornea can develop this inflammation.
The risk of Acanthamoeba infection is higher in:
- Swimming, showering, using the sauna, or taking a bath while wearing contact lenses.
- Touching contact lenses with unwashed or wet hands.
- Rinse the lenses with water and/or store them in water.
- Failure to properly clean the contact lenses or the lens case.
- Do not replace the lens solution.
