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Diagnosed with keratoconus from the age of 13

Living with keratoconus has its challenges, but with the right support, it is manageable.

By Published On: 4 August 20226.6 min read

My name is Anthony and I am 36 years old. I was first diagnosed with keratoconus when I was 13 years old.

I work as a sales & Operations manager of a building company, which I have helped build from the ground up. My professional career has ranged from stacking shelves, working in my degree field, owning and operating a café to working at a bank. I have had various sales representative roles and also driven Uber. Apart from when I was a teenager, I have tried not let my eye condition dictate what I could achieve.

At first the keratoconus diagnoses wasn’t a big deal. As I started going through the teenage growth spurt my vision quickly deteriorated. Life started getting complicated. It has been one hell of a journey. There have been many times when I just wanted to give up as I thought it was all too hard. However, there is always a way around things. Especially when the right expertise is sought out to equip you with the tools to overcome the challenges.

I first saw Jim at the Eye Practice in 1998, and have been seeing him for his expert assistance ever since. His expertise with this condition is second to none.  I have been very lucky to be able to have access to his services. Jim and I have had a running joke between us – The less that I see Jim the better life is lol, because if I’m there too often then it means there is an issue with my eyes.

Prior to having a consultation with Jim, I had been fitted with lenses that were not suitable for my eyes. Continued wear of these lenses could have resulted in permanent damage to my eyes.

Jim was able to fit me with the right lenses. Now all I had to do was get used to the foreign feeling of having a piece of plastic, in my eyes.  It was very uncomfortable.

man inserting contact lens

Inserting a contact lens. Man with blue eyes

Even though the lenses prescribed were the right fit, there was a constant sensation of feeling like there was sand in my eyes. I also found that the brightness of the world from seeing clearly, was too uncomfortable.  My stubborn nature kicked in. For the next 4 and half years I only wore the lenses from time to time. I got through year 9, 10, 11, 12 and 6 months of my first year at Uni pretty much as blind as a bat.

I managed without the lenses by correcting my vision in a weird way. By pushing the bottom of my eye lid up into my eye, I effectively changed the shape of my cornea and this allowing me to see clearly. (this only worked on my left eye). This was by no means a practical solution however I chose it because it was the path of least resistance. I occasionally wore the lenses here and there, mainly to learn how to drive but the uncomfortable feeling of having the lenses in prevented me from wearing them longer than a few hours. I really regret this as I could have got my P’s a lot earlier, been more independent and it would have given me a great boost as I was very depressed about the whole situation at the time and somehow, I settled to live a life with poor vision.

Then 6 months through my first year at university my dad bought me my first car, a 1996 Nissan Pulsar with a very loud exhaust. (I looked at it like it was a Ferrari and thought I was the luckiest person in the world – thanks dad). This was the catalyst that led me to finally get used to wearing the lenses more which allowed my eyes to be desensitised to that uncomfortable sand sensation which eventually went away.

Looking back, it definitely wasn’t the fanciest car but it was my ticket to independence and it gave me a reason to put up with the lenses. I could finally see and life got so much better. This meant no more 3 hour train rides to University, I had the confidence & independence to take a girl out on a date. Even the simplest ability to be able to recognize people from a far when I was out, was amazing.

From then on my life was not dictated by this condition. The keratoconus merry go round, however continued, and has never really stopped. See below some of the other experiences I have faced with some helpful tips and tricks which I have learnt over the years which I hope could help others.

I lost my first contact lens in a night club in surfers paradise while on holidays at age 19 and spent half an hour with friends and strangers looking for the lens on a dirty night club floor with no success. I had to then enjoy the rest of my holiday with one eye.


  • always have a spare lens available especially on holidays.
  • put your contacts on your home contents insurance policy as a specified item. (you or your parents will save a lot of money)
  •  if you feel the slightest pinch in your eye give it a break. Should it continue call your optometrist or go to the eye hospital if it’s the weekend to check it out.

The setbacks.

At one point  in 2008 I wore my lenses for far too long one day. I felt the pinch in my eye but did not pay attention and continued to wear them. That night I went to bed with a very red itchy eye.  I woke up the next morning practically blind in that eye. The pain was excruciating and I thought I had become blind. I rushed myself to the Sydney eye hospital as it was a Saturday and The Eye Practice was closed. What followed was a 3 hours wait. I was freaking out to see someone. Luckily, the scratch was just off my central vision, otherwise it could have been led to permanent vision loss. After using drops for a few weeks it settled down and I was able to wear my lenses again.

The last major scare happened about 6 years ago when my eye changed shape slightly. My cornea also thinned out which then caused the contact to rub against it. This irritated my cornea causing it to split slightly. This was not good. To help this I had to give my eye about a 12 month rest from wearing my contact. Luckily it was my bad eye that was affected. I managed to get by driving and living my normal life freely with one eye. It’s amazing how your brain adjusts to using only one eye.

After that 12 month period I tried scleral lenses to combat the issue of the thinning of my cornea which worked amazingly and I currently wear them and get by just fine.

I was worried the scleral lenses would be very noticeable because I read online that they would be very thick. This assumption delayed me trying the scleral lenses. I wish I had tried them out sooner.

Since that last scare there have been times I have needed to visit Jim for a range of reasons. It has however been relatively smooth sailing compared with the first 10-15 years with this condition.

I hope I have not scared anyone with the above experiences.

It isn’t be easy living with keratoconus but there is always a solution. We need to remember that there are other people living with much worse conditions that are far more debilitating.

What the future hold for my eyes? Will I need a transplant one day? Or will I find other ways to avoid it? I am not sure.

We live in the most advanced age of medicine and I am confident I will find a way to deal with whatever comes my way.



  1. Adrianne 7 August 2022 at 8:19 pm - Reply

    Wonderful read for me, thankyou Anthony. I too have learnt to manage and live with my Keratoconus and I am now 54yrs. I will be seeing The Eye Practice in 2 weeks and you have given me the confidence to put myself first and try to find some better alternatives. I wish you the best and thankyou for sharing this not loved but doable road of Keratoconus..

  2. Jason 10 August 2022 at 11:02 am - Reply

    I too have graduated to scleral lenses after wearing RGPs for almost 30 years. They have been a game-changer in terms of comfort.

    Also, I totally agree with your tip about adding contact lenses to your insurance policy. They are expensive items and the cost of covering them is negligible.

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