Hi I’m Dale, I have Down syndrome, I’m autistic, I can be extremely challenging because the world doesn’t suit me very well… and I have KC. I will be 40 this year. My abilities are at about a two-year level. I love planes trains rugby and You’ve Been Framed. When I was 5 my birth Mum had the folds by my eyes resected as she didn’t want me to look Downs. What hospital would do that? Later I was adopted into my always and forever family.
When I was 8 I had a squint corrected and instead of the promised left eye and despite a big marker pen arrow on my face, the guy did both eyes “for good measure”. Ruined my good eye. The medical services have always been careless with me! They told Mum to drive me home straight away. I was cold and grey but they said they needed the bed. In the car I stopped breathing I was so congested. When I was 11 a doctor in Spain thought I had leukemia and offered to open me up to see, he said it didn’t matter if I didn’t survive as I was defective anyway….we came home fast. I was fine. When I was 14 I was diagnosed with keratoconus, “severe and progressive.” Gloucester Royal Hospital had no experience and bandaged my hydrops eye which went septic and stinky. Luckily Mum didn’t stick to their advice and we didn’t go back. She took me to Bristol Eye Hospital for assessment in 2000. We had hope and excitement! The Consultant Ophthalmic Surgeon said, ” Visual Acuity is 6/60 with correction (spectacles). This is probably adequate for his needs. Contact Lens fitting is not a sensible option in someone with an intellectual deficit.” Adequate !! Er Nope. Luckily Mum likes a challenge. And the word “lenses ” had been mentioned and being told ‘No’, made her cross! Mum found the kc group and via them, the magical Ken Pullum. Ken saw me for hours and hours and prescribed scleral contacts – I have help managing them and have vision as good as anyone since then 🙂 14/20 distance and symbols smaller than 2mm up close. I was well supervised by Cheltenham General Hospital until staff changes meant they no longer had the expertise. In two weeks, I’m making a return visit to Ken after 25 years. I wonder if Ken will remember us. We remember him; he is my KC superhero.
“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!
