The Trials and Tribulations of Keratoconus

Hello, I'm Chris, a 32 year old from Birmingham, UK. I was diagnosed with Keratoconus when I was 18, although it probably started to develop around 16/17. I remember going to the opticians thinking that I needed glasses and the optician being surprised when noticing the shape of my corneas. However, my sight was still absolutely fine to function in life perfectly well and I actually forgot all about it. After acquiring a degree and doing a bit of travelling around eastern Asia and Australia, life was going fairly well, I had lots of ambition and began DJing at various nightclubs around Birmingham.

At the age of 23, I remember waking up one morning and my eyesight in my left eye has severely degraded, almost overnight, I lost a significant amount of vision, naturally terrified I went to the doctors, who then referred me to the eye hospital and I began to properly learn about the disease that I had. Things became a bit different ever since that day, I had pain around both eyes for months, my right had also got worse (but nowhere near to the extent of the left). I found reading and using computers to be really difficult and just the detail of the world around me became distorted and murky, everything looked dark and gloomy all the time and like anyone with a blindness disease will tell you, you feel incredibly lonely.

I had tried for years to find contact lenses that would suit me but each time I just couldn't get on with them. I think I knew deep down that I needed surgery on my left eye as it had advanced so far to the point where lenses were incredibly painful to wear and vision could barely be corrected. By this time though I had become pretty depressed by it all and luckily my DJing work had been going quite well so I'd always been able to just about scrape a living, doing something that I really enjoyed and didn't really need good sight to be able to do, so life just went by, I just got on with it.

By 27/28 I had noticed another big push in the development of Keratoconus, I think my left eye had advanced to the point where it couldn't advance any further and my right eye began to get worse. Even though I could get fairly good vision out of my right eye with an RGP lens, I had opted not to wear them, I started to accept that my sight was what it was and learned to live with it but as I became more anxious and depressed about it I decided it was time to really step up and challenge the problem I had.

I didn't feel like my life was really going anywhere and finally built up the courage for transplant surgery. I was always under the impression that surgery was extremely risky and chance of success wasn't particularly great, which is what scared me the most. I didn't have to wait too long for a donor, I think it was about 4 months and here I am now, about 12 days after surgery, my eye appears to be healing well, I'm already starting to feel like it was a great decision. The days surrounding the surgery had been pretty tough physically and mentally but even at this early stage, although blurry and misty I can see better than I could previously and gone are the halos and distortions.

I know there's still a long healing road ahead but I'm very much up for the challenge. I haven't noticed any progression at all for about 3/4 years now so I'm hoping that the development of the disease has stopped and I can really deal with this burden that's held me back for so many years.

The above story was shared by Chris, a member of our keratoconus community on Facebook.

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