My experience with Keratoconus

I want to try and raise awareness for this disease that affects somewhere between 1 in 500 and 1 in 2000 people. I have fairly advanced Keratoconus in both my eyes. As background, I’m a 28 year old male so I’m afraid I’m still in the window where things can get worse. I’m originally from Uganda and my Opthalmologist said that this may be one of the reasons why I have it. Other than that I don’t have any other co-morbid conditions except occasional low blood pressure.

As a child, I would occasionally go with my parents to the optometrist to pick up their scripts. One day in ninth grade, the optometrist suggested I get a test done. Turns out I needed glasses. My left eye had deteriorated slightly and the guy I was seeing said I should get a pair. I felt shy wearing them at school so they stayed in their case (I was already bullied occasionally so this would only add fuel to the fire). I never really needed glasses until 11th grade when I started spending a lot more time reading. I went to the optometrist again and he said that he suspected I had Keratoconus. I was staying in East London in the Eastern Cape of South Africa and I think they weren’t as advance with regards to Keratoconus treatment.

In 2008 I went to university in Cape Town to study Physiotherapy and things continued to get worse. In January 2009, I had corneal crosslinking done on my left eye. I was told that it would halt the progression. By the time I reached my final year in 2011, my right eye also started getting worse. I moved to Johannesburg for work in 2012 and in 2014, I failed my driver’s license renewal eye exam. In 2015 an optometrist in Johannesburg prescribed a set of hard lenses. My eyesight was near-perfect. I could read everything, but my eyes hurt after an hour because the lenses moved around so much when I blinked. By the end of the day I looked like was high and my eyes burnt until I managed to fall asleep. I couldn’t do it. My optometrist told me my Keratoconus was so bad that our only other option was to wait until I really needed a transplant. I wasn’t ready for that news…

I remember getting a phone call from him some time later to say there were these new hybrid lenses on the market that were ultra-comfortable. I booked an appointment for a fitting and we got to work. I received them about a week later and they gave me a tutorial on how to fiddle with my eyes. They were a bit more comfortable, but the vision wasn’t as sharp as with the hard lenses. In October 2015 I had to go to Uganda for my sister’s wedding. I had been asked to read a lengthy passage from the bible at the service and I accepted. I was excited that I would be able to read well and interact with the other people at the wedding without needing to squint so hard. On the morning of the wedding, I wasn’t able to fit my lenses as I hadn’t used them that frequently in the lead up to the wedding day. In hindsight, I should’ve practiced wearing them each day so that this wouldn’t happen. I ran out of time and had to rush to the wedding without my lenses. I panicked as she walked down the aisle because I didn’t want to be remembered as that guy who messed up the bible verse. I’d just like to mention that by this point normal glasses were useless. I was at this awkward place where I couldn’t use glasses, but I didn’t feel I needed to use lenses. I struggled through the Bible passage and didn’t look like a total idiot, but I vowed that when I got back to South Africa I would do something about all this.

When I returned to the country, I started researching intrastromal rings and found an Opthalmologist that fits them. At my first consultation, he let me know that my medical aid wouldn’t help out at all. He also told me that once I was done with the rings, I’d need to have corneal crosslinking done on my right eye. I went straight to the bank and got the money. I think the whole wedding thing really messed me up and I wasn’t going to let cash stand in the way. I planned to save everything I could from physiotherapy work as well as focus on music production from 4pm to 11pm daily to be able to pay back that loan. All the procedures and consultations came to about R90 000 or about $7500 (2 intrastromal rings in each eye, crosslinking in my right eye as well as scleral lenses). I’ll go into each procedure in subsequent posts otherwise this one will be way too long.

After everything was done I had 20/20 vision in both eyes and the scleral lenses fitted perfectly. As I type this, I can’t feel them. I tend to only feel them when it’s a super dry day out or if I spend very long periods in the sun. My dry eye has gotten a little worse over the past year, but I’m trying to control it. I’ll post about that too. I need help. I’ve had small hiccups along the way, but my quality of life is way higher now than it ever was as a student. Please link me to any cool Steem articles you know of about Keratoconus. If you know anyone who might have it, let them know that technology is advancing quickly. Although I got lucky to have such good corrected vision, I know that health care professionals can do a whole lot for it.

Regards,
SB