“I have had suspicions that you might have Keratoconus in your left eye”
In the early 1990s I went to see my optometrist back home in Finland for my annual check up. I had noticed that sometimes the correction with just glasses left my eyesight especially on the left side lacking in clarity and focus. Another odd thing was that when I was reading I was always holding a book within an inch from my eyes. This was the only way I could see the letters clearly enough to read.
I always remember my reaction to this diagnosis:”Keratoconus? What on earth is that?”.
At that point it felt like everything was about to change for me and little did I know how much! I had been a patient with this particular optometrist since I was seven years old and she had always helped me with glasses etc. This though sounded like something entirely different and well, yes scary.
She told me about it and how the shape of my left cornea was growing conical and this was why my eyesight was deteriorating. She was not able to say why I had it and I most certainly had never heard about it before let alone know anyone who had it. My right eye was unaffected and has remained thankfully like that until now 30 odd years later. Later on I learned that I do have it in that eye as well, but luckily it never developed further.
I was sent to a local specialist eye store who were experts in contact lenses that same day. This was also all new to me and to be honest probably kind of scarier in a weird way than the actual diagnosis had been. I had a sort of quick overview of lenses and was told that my Keratoconus in my left eye was mild and RGPs were pretty much the only option at that point. So I was fitted with hard lenses in my eyes.
I have to say that my eyesight improved instantly and it was great to be able to see clearly once again. It took quite some time to get used to wearing them and taking care of the lenses – back in those days water was used to clean them! Something that would be a complete taboo now due to danger of infections. It does make me smile thinking back to those days. CXL was not even a thing back in those days.
Fast forward a few years and sadly progressing fast in my left eye. After further appointments, cornea transplant was the only option available and I was referred to the Helsinki University Hospital for the operation which eventually took place in 1996. This was quite scary and in those days the internet was still new and getting information about this was really tricky. There were some discussion forums and websites in existence and I remember trying to find as much information I possibly could prior to the operation.
My life changed entirely thanks to get gift of sight to a donor in Denmark – yes, I am 1% Danish now! Healing took quite some time, but my eyesight got better gradually and in the end I only needed correction with glasses. At that point I had moved to the UK and had to fly occasionally to some final appointments back home in Finland.
My graft has been a true success story – 27 years and still going strong!! I dont even need steroids or other eye drops anymore. Sadly though things have not been completely plain sailing and roughly two years ago my eyesight started getting blurrier with glasses in my left
eye. I went to my optician and was told that they were no longer able to help me as I had developed scarring in my graft. This was a shock to the system and while waiting for the referral and eventually appointment at the cornea clinic at my local hospital I was quite miserable as I was not not able to see well. Working with screens became very tricky, but thankfully I did get occupational glasses which helped a lot with this problem. Sadly my appointment got rescheduled a few times and the wait was fairly long. This is why I had occupational glasses prescribed.
Eventually the appointment arrived and of course it felt anxious waiting to hear if and how they could help me to see better again. I was given two options at this point – either keratoplasty to remove scarring with laser or to start using special contact lenses.Due to risk with keratoplasty I was referred to the contact lens clinic at the hospital. It took three months to be seen, I am now wearing a mini scleral in my left eye and RGP in my right one. My vision is great and I can wear the lenses comfortably about 14 hours daily. Fitting process has been long and currently I am on my fifth pair and very near final fit.
I am so grateful for the NHS and being able to see crystal clear again. Keratoconus certainly can be a tough one to deal with especially as it is not that well known and more awareness is needed for sure. It can be really scary and cause anxiety, but with right information and most importantly professional care it can be much more manageable with a good eyesight. Everyone is different of course, but I am happy to say that I have had the gift of eyesight now twice in my life. There is always hope!
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