Surgeries, complications and emergency hospital visits – life with aniridia
“It often feels as if I have lived at the eye hospital more than at home, due to surgeries, complications, and emergency visits.”
This is the story from Marie Olsson, 44 years old from a small town called Katrineholm in Sweden, who was born with an eye condition called aniridia. “When I was born, it was immediately noticed that something was wrong with my eyes because they were constantly moving (nystagmus). I was therefore referred to an ophthalmologist. When I was about three months old, I met my eye doctor and was diagnosed with aniridia,” she explains.
Living with this condition would affect many aspects of her life: “At school, I was bullied because of my eyes and because I wore glasses, which hurt deeply, emotionally. At the age of 23, I started developing wounds and infections in my eyes caused by preservatives in my eye drops. When the cause was finally discovered three years later, my corneas were completely destroyed,” Marie mentions.
“At the time, I believed that this would be the only operation I would need. Unfortunately, that was not the case. Since then, there have been far too many surgeries and complications.”
By then, she had also become a mother to her beloved son, Leo. “At that point, I decided to seek out different doctors in Sweden who could help me, because I wanted to be the best possible mother for my son. I eventually found a doctor, Ulf Stenevi in Gothenburg, who could perform a corneal transplant on my left eye, which was the most affected. At the time, I believed that this would be the only operation I would need. Unfortunately, that was not the case. Since then, there have been far too many surgeries and complications.”
Many surgeries and complications later
Today, both of her eyes have been operated on. “I have undergone several glaucoma surgeries, cataract surgeries, treatment for wounds that ruptured, corneal transplants, and two stem cell transplants in my left eye following cataract surgery.” Despite all these procedures, she actually sees better today than she did before her first operation in 2010. However, the journey has been long and incredibly difficult.
“When I first started using eye drops for dry eyes and glaucoma, there was very little information about preservatives. If I had known then what I know now, my corneas would probably not be destroyed today, and I might not have needed corneal transplants or undergone around 18 surgeries.”
“If I had known then what I know now, my corneas would probably not be destroyed today, and I might not have needed corneal transplants or undergone around 18 surgeries.”
“I needed much more information about complications and about which surgeries would be required after a corneal transplant. I was alone with the doctors, expected to absorb all the information and make very heavy decisions. It was too much for me, and I missed both important positive and negative information.”
After the corneal transplant, her vision was incredibly good, just as good as it had been at its best when she was younger, being able to read the fifth line on the eye chart. But the improvement did not last long. “My vision quickly deteriorated, eye pressure increased, and cataracts worsened in both eyes. My cataract surgery was scheduled for October 2011, but I developed a severe infection in the transplanted eye along with a large corneal wound. I was hospitalized for one week and received cortisone and antibiotics every hour.”
When she was finally discharged and returned for a follow-up the next day, the corneal wound had ruptured, and she had to undergo emergency surgery to repair it. The cataract surgery was postponed for several months, followed by an intense period of repeated surgeries.
“I have experienced constant irritation and pain in my eyes. What has helped the most is wearing bandage contact lenses, which are replaced every three to four weeks at the eye clinic. My body never had time to rest or recover, and I became completely exhausted, something I still have not recovered from. At almost every medical appointment, there is new negative information that my body struggles to handle.”
Understanding her eyes and managing eye drops
Over time, Marie has learned to understand her eyes and recognize when it is time to go to her doctor at St. Erik Eye Hospital. “I am incredibly grateful to have Per Montan as my doctor. Without him, I would not see as well as I do today. He allows me to come in quickly when I feel that something is wrong, so I receive fast and high-quality care.”
Unfortunately, Marie is on disability pension due to her eyes and mental health, so she is at home. “My “job” now is managing my eye drops. At one point, I used up to 72 eye drops per day. And when I have corneal wounds, I use large amounts of cortisone and antibiotic drops, as well as many drops and ointments for dry eyes.”
However, high doses of cortisone eye drops make the eyes very dry, which can cause new wounds. Moreover, using cortisone and antibiotics together while wearing bandage contact lenses increases the risk of infections. Still she wears them: “Because the lenses reduce my pain and slightly improve my vision, I still choose to use them.”
Daily challenges
How does aniridia affect her day-to-day life? Marie shares a few examples: “I for example cannot see price tags or signs when I go shopping. I find it difficult to see where I am going when I am outside, and I cannot recognize people I meet. I struggle to be social for longer periods because the visual impressions become overwhelming.”
Making others understand how she sees and how quickly she becomes exhausted is very difficult. “Every day, my vision gets worse, and I need assistive devices that I really do not want to use. I do not want to show that I have a visual impairment because I am afraid of being bullied again. I want to manage on my own for as long as possible. It is heavy to force yourself to get up in the morning when you wish you had healthy eyes. Today, I live with severe anxiety and constant worry — afraid of waking up one day to find that something has happened to my eyes and that I have become blind.”
“Today, I live with severe anxiety and constant worry — afraid of waking up one day to find that something has happened to my eyes and that I have become blind.”
If she could do it, so can you
“I want others in the same situation to learn what kind of help is available and to hear from someone who has lived through a severe eye disease that is often considered “inoperable”. I want them to see that there is still hope and that good care does exist,” Marie explains.
“My journey has been difficult, involving many doctors, but through persistence I eventually found the best doctor and the best eye hospital for my needs. If I could do it, so can you.”
