Keratoconus (KC) doesn’t just affect your vision – it can also impact your daily life and emotional well-being. Distorted eyesight from KC can interfere with tasks like reading, driving, or recognizing faces, often leading to frustration or anxiety. That’s why coping with keratoconus is about more than just treating the eyes; it’s about preserving your quality of life. The good news is that with the right strategies and support, many people with keratoconus continue to live full, meaningful lives. Below are five key coping strategies, each aimed at helping you protect your vision and your day-to-day quality of life.
At our AGM and Speaker meeting both Dr Abass and optometrist Lynn White, carefully explained the progress of their work to find a solution for those of us who have to cope with not wearing contact lenses for a period of time; yet still need better vision for dealing with basic tasks. Both Ahmed and Lynn are convinced that with the advance of technology, spectacles can be manufactured to take account of a non-orthogonal angle of astigmatism. Indeed, some who have worn the spectacles in laboratory conditions, do not want to give them back.
In this clip, Dr Abass explained how he was able to interpret the high-resolution results without relying on the software provided by modern topography machines. He noticed that astigmatism is not always orthogonal, which led to his research project to find a better solution for keratoconus.
Here Lynn White explains the wider implications of Dr Abass’ research beyond keratoconus.
More details will follow in the next newsletter. To see a fuller summary of the talk click here
There is still a long way to go but results to date are promising.
Here is the press release from Liverpool University.
In a recent KC patient group meeting, Dr Ahmed Abass from the University of Liverpool unveiled exciting research into a new type of spectacle lens designed to help those living with keratoconus; a progressive eye condition that causes thinning and irregular shaping of the cornea.
Traditional glasses often fall short in correcting vision for keratoconus patients due to a phenomenon called non-orthogonal astigmatism. However, Dr Abass and his team, supported by Fight for Sight and the UK Keratoconus Self-Help and Support Association, have been exploring an innovative lens design that targets this issue directly.
The results are encouraging. In this pilot study, many participants experienced clearer vision, reduced ghosting, and sharper letter recognition with these specially designed lenses.
“This is the first study of its kind,” Dr Abass said. “We’ve shown that the idea works. Now we need to focus on scaling it up, finding ways to mass produce these lenses and test them on a larger group.”
As the project looks towards the next stage, development and commercialisation, there may be exciting opportunities for those in the optical or medical device industries to get involved. Anyone interested in collaborating with the University of Liverpool or learning more is welcome to contact Dr Abass at a.abass@liverpool.ac.uk. or connect via linkedin
It is a small but meaningful step forward, offering new possibilities for those seeking alternatives to contact lenses or invasive procedures.
Investigator Initiated, Prospective Study of Xenia Corneal Lenticule
This information is provided directly by researchers and we recognise that it isn’t always easy to understand. We are working with researchers to improve the accessibility of this information.
Cornea ectatic conditions such as keratoconus and post-LASIK (Laser In situ Keratomileusis) ectasia are disorders of the eye that are notorious for its uncontrolled progression over time, leading to loss of vision. There are valuable treatment options for controlling disease progression in mild to moderate stages of such disease. However in advanced cases and / or when contact lenses cannot be worn, surgery remains the only treatment option to rehabilitate vision. Most treatment options are highly invasive and represent significant risks. This study evaluates a novel corneal implant, Gebauer™ Lenticule to treat severe keratoconus or post-LASIK ectasia. This implant is derived from porcine collagen and intended for intra-stromal insertion. The Gebauer™ Lenticule is expected to improve the stability of the cornea while not impairing the vision. The procedure is an additive procedure after other treatment options have been exhausted. The procedure is reversible with removal of the implant (in the unexpected case of an adverse reaction), and vision may be restored to baseline.
The purpose of this study is to evaluate how well the implant is tolerated, it’s safety profile, and how effective this new treatment option is in the treatment of keratoconus or post-LASIK ectasia.
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:
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.
If you have been following this topic, you would have seen our earlier posts here and here
We are pleased to report that Dr Ahmed Abass has published his paper which we are proud to have co-sponsored with Fight for Sight.
Dr Abass has kindly provided the following simplified abstract. The full paper can be read here. You can also view his other papers on his University Page here
Purpose
The study aimed to investigate whether non-orthogonal correction in spectacles would improve the visual acuity of people with keratoconus. Non-orthogonal correction is where the angle between the cylinder powers of a spectacle lens for astigmatism is less than or greater than 90 degrees. Typically, keratoconus patients have this type of astigmatism, which is why standard glasses do not work well.
Methods
The study involved 18 patients with keratoconus from an eye clinic in Liverpool. After evaluating their eye condition, 23 eyes were selected for testing, while others were excluded due to the eye having little or no keratoconus or severe dryness. Each eye was tested first with standard lenses, and then with non-orthogonal lenses. The lenses were tested with different angles until the best one was found for each person. Participants were asked to rate their vision, specifically how clear letters appeared and how much “ghosting” (double vision) they experienced with each lens type.
Results
Of the eyes tested, 61% showed improved vision with non-orthogonal lenses, 30% saw no change, and 9% saw a slight decrease in vision. Regardless of vision improvement, 87% of participants noticed clearer letters, and 79% reported less ghosting. Most of the preferred angles for the non-orthogonal lenses were between 80° and 85°. The study also showed that for many people, the non-orthogonal lenses could provide a more accurate prescription compared to regular lenses. Nearly all participants said they would be interested in trying non-orthogonal glasses.
Conclusions
The study suggests that non-orthogonal lenses could improve vision and reduce issues like ghosting for people with keratoconus. While this is a promising step toward developing better glasses for these patients, more work is needed before these lenses can be made for everyday use.
We are hoping to arrange for Dr Abass to speak at one of our future events.
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.” Our local 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 another 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!
