Category: Member Stories

Share your Story. It is interesting to learn how others cope by sharing experiences. Simply email your story to: chair@keratoconus-group.org.uk. You can remain anonymous if you wish. You can also comment on the stories below and add useful thoughts and information.

Keratoconus in my teens/twenties


Around the age of 15/16 I was diagnosed with keratoconus. I was a glasses wearer, but I was really struggling to see anything in much detail. Trying to see the board at school was tough, even close up reading became a challenge. I spent most of my GCSE years squinting, much to my embarrassment. None of my friends had the same difficulties that I had. My Mom requested large print for my exams, and although at the time I felt pretty mortified by it, in hindsight the larger font and extra time was a big help – thank you Mom…..

That Summer, I was given rigid gas permeable lenses to try. I’ve always been very sensitive about anyone going near my eyes (even now at the age of 30, during a regular check up at the eye hospital it can be a challenge!), so someone putting these uncomfortable, foreign objects in my eyes was quite the ordeal. Especially considering the way I was taught to remove them was with a mini plunger – terrifying! Regardless, due to the steep improvement in vision with these RGP lenses, I persevered, and eventually got used to them. I even got used to wearing the single lens if one of my eyes was giving me some grief. My vision had improved and my confidence was up.

However, it wasn’t all good times in the coming years. I learnt the hard way that rubbing your eyes can make your vision worse (I haven’t done that now for 13 years and counting…..), I was given new RGP lenses which would prioritise comfort rather than sight, even having to change to piggyback lenses in one of my eyes as it couldn’t cope with just the RGP anymore, and I was told on a few occasions that my condition was worsening of its own accord.  The lenses themselves could be quite uncomfortable at times, and the slightest speck of dust could often send me into full on tears! And all this time being a young adult trying to navigate A-Levels and then university, I didn’t really listen to any advice I was being given, and I just got frustrated and angry at my hospital appointments. I wonder if the feeling may have been mutual from the hospital however, as I was constantly asking for replacement contact lenses due to them flicking out. Unfortunately when you’re experiencing the uni lifestyle of bars and nightclubs, the dehydration from a night out means that all I needed is a stray hand in and around my eye to make my contact lens flick out. There goes another payment (sorry Mom!) and many weeks waiting for the new lens to arrive…..

Fast forward to adult life in a full time employment at the age of 25 ,and I passed my driving test. I was always nervous about driving – I didn’t always have confidence in my sight (regardless of whether I could read the required line on the eye chart or not) and thought that it might affect my driving ability. After a few years of having lessons on and off, I finally booked a test. Weirdly the thing I was most nervous about on the day wasn’t actually the driving, but reading the reg plate in the car park! 

I feel that this is the point where my outlook changed. I could drive, and once I got my first car, I suddenly had way more opportunities in my life that were not there previously, in particular for work and travel. Now that I had this freedom, I really did not want to lose it. I started to take more care in my day-to-day life – less wear time with the contact lenses where possible, more time and care with cleaning and storing the lenses, I even started to wear Edgar Davids-esque protective goggles for sport. I didn’t care if I got the odd comment – I needed good eye health now more than ever. 

During a regular eye check-up at the hospital, I was told once again that my condition had deteriorated, and that once again, I should undergo cross linking to stop the condition from getting any worse. This operation is something that I had been told about on a few occasions previously. However, with my lack of affection of anyone or anything going near my eyes, as well as turning a bit of a blind eye to my condition in years gone by, I had always ignored the suggestion. This time though, I felt like I had something that I wanted to preserve – my eyesight for driving. I reluctantly agreed to be put forward for cross linking (under the condition of being under general anaesthetic, you can touch my eyes but I don’t want to be awake to see it!), and to my surprise within two months I was in hospital having the operation. I have written a piece previously about this operation, link as follows:

David’s CXL Story

Before my operation, I was very nervous and I felt like I needed reassurance from somewhere. For many years, my Mom had been in contact with the West Midlands Keratoconus Group, even going to a few of the meet ups in Birmingham. Although her previous suggestions for me to join had fallen on deaf ears, this time I decided to join the latest Zoom call. It was an extremely eye-opening experience. Not only was I not alone with some of my experiences, they were in fact commonplace. Finally I had met some other people who were also fed up of the question ‘why can’t you wear glasses?’  Some of the members really had some extraordinary stories to tell which dated back decades, and it quickly became clear to me that some of my own annoyances in the past needed to be put into perspective a little more. On the call there were others who had gone through the cross linking experiences, and they proved incredibly helpful to get in contact with both before and after my procedure. 

Over 4 years on and I continue to join the Zoom calls and go to the in-person meets when I can. Because of the group, I have learnt about many other types of procedures/contact lenses/eyes drops/helpful practices etc which I never knew existed. Thanks to the group, I learnt about mini scleral lenses. At one of my contact lens appointments, I pushed for me to try these out. I have now been wearing mini scleral lenses for over a year, and the vision and comfort that they have given me so far has been fantastic.

At these meetings/on these Zoom calls, I hear of worried parents whose children are struggling and they don’t want to know about their condition. I find it quite humorous as the stories often parallel my own experiences, but I also will these young adults to step forward, talk about their condition and learn from others. Perhaps they also need their own eureka moment like I did when it came to protecting my vision for driving, or perhaps they can read something like my story and see that there is help out there if you ask for it.  

Help others benefit from your experience. There are two major difficulties with Keratoconus:

a) No one has heard of it or can even pronounce the name

b) You never meet anyone with the condition.

That is why ‘Member Stories’ are so important. We all have different needs and find a variety of coping strategies. Stories can be a useful way of getting the message across to friends, family members, teachers, and employers. It may be something as simple as sitting with your back to a window. How can a teacher understand that a light adjacent to a blackboard can completely obliterate what is written on it? Or the worst, why don’t you wear a pair of glasses?

A simple story or illustration may be all that is needed to completely change someone’s perspective. How can another person appreciate that you could drive home quite legally after a day’s work, take your contact lenses out and become technically blind and incapable of crossing a road safely?

If you have a Keratoconus story to tell, I would love to hear from you.

Dale’s Story

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.

Without and With Lenses

Matti’s Story

    “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!

    To see other member Stories – Click here

    David’s CXL Story

    In December 2020 I underwent cross linking at Birmingham Midland Eye Centre. The procedure was on both of my eyes and I had the operation under general anaesthetic. I am writing this 6 weeks after the operation, so it is all fairly fresh in my memory.

    Me and Signing Up To Cross Linking

    I was diagnosed with KC as a teenager over 10 years ago. As a teenage boy and then someone entering their early twenties at university, I didn’t want to hear or talk about KC. It’s only in recent years that I have made more of an effort to look after my eyes. I had heard murmurings about cross linking over the years, but it was never something I had considered having done. It was only when I went for my last routine scan of my eyes in November 2020, and was told my condition had deteriorated again since the previous scan, did I decide to sign the forms and join the waiting list for cross linking. I only signed them under one condition however – I must be put to sleep for it. Having heard the consultant talk about the process of cross linking, it sounded like my worst nightmare. No chance could I have that done whilst awake!! I’m pretty sensitive about my eyes at the best of times, so no way was someone scraping a layer off of my eyes with me awake! I was told choosing general anaesthetic would increase my waiting time for the op, and that combined with the Covid situation, I was looking at a lengthy wait.

    2 or 3 weeks had passed since being put on the waiting list for cross linking. I wanted to let my work know that I needed time for the operation and I wanted to give them a heads up of when this may be, so I randomly called up BMEC to see if they could give me an estimated date of my op. I was sat there thinking they wouldn’t be able to give me a date, or they’d say Spring/Summer 2021. The response was ‘can you come in December 29th?’ My response was ‘wait, you mean December this year?? In 2 weeks’ time??’ I must have gotten very fortunate and booked myself in somebody else’s cancellation. 

    The Operation and Recuperating

    In these Covid times, I had to self-isolate 2 weeks before the operation. A few days before going to the hospital I had to take a Covid test – that wasn’t a pleasant way to start Christmas Eve! I also had my temperature regularly checked whilst at the hospital. All was safe. 

    As for the operation itself, I cannot tell you anything about the experience. I have heard various stories from people who have had cross linking under local anaesthetic, and I have not heard any horror stories. It just sounds a little uncomfortable. It’s all good me saying that in hindsight though, I am very happy with my decision of general anaesthetic.

    When I came around after the procedure, my eyes were in a fair bit of pain. I had read someone say the pain was like gravel being stuck in your eyes, I can probably agree with that. Hot gravel.

    Having had general anaesthetic, you need to eat something and go to the loo before you can be discharged. My Dad then picked me up and took me home .I went into my room, or cave as it was named due to the darkness inside, and more or less stayed there for 5 days. That’s probably how long it took for the pain to go from my eyes. I kept my eyes closed throughout the 5 days and took my eye drops given to me by the hospital four times a day – anti-inflammatories, anti-biotics and steroid drops. It was a bit difficult at the start to put in the drops – my eyes were sticking closed so it felt wrong/uncomfortable to open them for eye drops. It got better as the days went on. I got given an eye mask at the hospital to wear for sleeping (so you don’t rub your eyes in the night). The pain got less and less over the 5 days, until I finally started to open my eyes for extended periods of time, and then the next challenge began – adjusting to light. Having been through an operation and been closed in a dark room for 5 days, it took a while for my eyes to get used to any kind of light in the house. I built it up slowly, day by day, and bit by bit I could watch TV for longer/look at my phone more often/be in a room with lights on. 

    After two weeks I was only on the steroid drops twice a day, as these were still needed for a further two weeks. I went to the hospital for a post op check and was told my eyes were OK but still recovering. I originally took two weeks off of work as I had been told I could potentially wear my contact lenses again at this point after the operation. But the hospital signed me off for another two weeks so my eyes could further recover. I don’t have glasses I can wear, so me trying to work without lenses would have definitely been a strain to say the least! Thankfully my work were very understanding about the situation.

    Now and After

    I have been back at work for two weeks now and more or less returned back to normal life. The contact lenses I am wearing are those fitted for me from before the operation. There are good days and bad days with them at the moment. There’s no guarantee the lenses will give you the same level of vision/ comfort as before the op  And there is no point going to get any more fitted as your eyes are still stabilising 6-9 months after cross linking. I believe this is the same for glasses wearers. So the next steps for me are to wait for the next post-op appointment in March, and then see the contact lens people in June for a contact lens fitting for my (hopefully by then) stable eyes.

    I don’t think I’m currently in a position to comment on the success of the cross linking procedure – I will have to wait a while yet. It’s important to remind myself that it’s a long term benefit, no matter how impatient I’m feeling!

    Tips

    • Have entertainment to hand: download all the audiobooks/podcasts you can find! Between those and the radio, there’s not much else to do when you’re in the early stages of recovery. If you have an Alexa/Google Nest type thing which has voice control, that’s a bonus!
    • Know the layout of your surroundings: you probably think you know the way around your room with your eyes closed – well recovery is the perfect time to test that theory! Make sure there aren’t any hazards in the way and that things you may need to access are in easy places.
    • Talk to people – make sure you’re still connecting with people! I was sending voice messages to friends/family over the new year. In particular it was helpful to communicate with someone I met at the West Midlands KC Group. She had had cross linking done a few years ago, so getting her insight/tips were very useful.

    Read other Member Stories on our on our Blog – Here

    I am a parent of a Keratoconus sufferer

    So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.
    I have wanted to post Brooke‘s experiences so often but it never felt right.
    Now I want to tell her story and hopefully it can resonate with other sufferers.

    Continue reading “I am a parent of a Keratoconus sufferer”

    The Man with the Funny Shaped Eyes

    A while ago I wrote this, just really to get it off my mind and keep it down to look back on in the future, but if my experiences can help just one other person feel a bit more at ease about the whole thing then even better. KC really disrupted my travel plans aha, but I didn’t really know what to expect or what was normal. So, have a read, and leave some feedback if you want  Continue reading “The Man with the Funny Shaped Eyes”

    Dougie’s Story

    I’m 27 and live in edinburgh and was originally told I had KC when I was 12 years old I can remember it well as I was surprised being told I had this strange condition that I’d never heard of, before being told by my optition that I had nothing to worry about. Looking back at the memory and knowing what I know now I would have called up my GP myself as a 12 year old child and demanded a referral straight to the ophthalmic department but because at the time I had excellent vision in both eyes the optition thought it best not to act so quickly and watch it progress. Because I was told not to worry it was as if i was being told not to act and so I never.  Continue reading “Dougie’s Story”

    Richard’s Story

    I was first diagnosed with KC around 11 years ago, but I really didn’t think that much about it at the time, and it hardly bothered me for the first few years. I used to go for regular eye tests and the opticians would always mention it, but we tend to move areas quite regularly due to work so I hardly ever saw the same optician twice so no one was really monitoring it to notice it getting progressively worse.   Continue reading “Richard’s Story”