I was diagnosed with Keratoconus when I was 11 years old. I remember it so clearly, I went to sleep one night and had perfect vision and woke up the next day and the only thing I could see out of my right eye was a white cloud. I told my mum I couldn't see anymore, and due to the fact that I'd recently told my mum I wanted glasses (completely irrelevant) because I'd seen the Olsen twins with them she didn't take me seriously. Fast forward a few weeks, I was at the GP for an unrelated cause when he noticed my right eye was very red. I told him how I no longer saw out of it and it was just a white haze. I was rushed to the optometrist next door who then diagnosed me with Keratoconus and sent me straight away to the Corneal specialist.
My Keratoconus had progressed very rapidly to the advanced stage of Keratoconus, and after trialling a hard contact lens I immediately was inflicted with hydrops, a condition associated with Keratoconus that leads to a milky fluid in the eye which left me with a rather large scar on my cornea, directly over where my pupil is. Although completely blind in the right eye, my left eye had yet to show signs of any Keratoconus however a year later it came and my vision went downhill very fast. I had my first cornea transplant in my right eye at age 12, then had my cataracts removed at age 15 as a result from the steroid drops.
I remember being in school, and people waving to me on our way to class and I would give everyone a squinty confused look, as despite doctors attempt at improving my vision it just never got there. Everything was a tad bit more difficult, I couldn't balance properly in ballet as I couldn't focus my vision on a spot, I couldn't read the sheet music when
I played the flute, I couldn't read the solutions on the whiteboard in class, and I certainly didn't see the ball coming towards me in Volleyball.
I have tried every type of lens under the sun, with my ever so patient lens fitter however I have never been able to tolerate them or get one the fit just right, not scleral, not RGP, not hybrid not even a soft lens! This made treating my vision with Keratoconus as glasses are only successful to a certain point.
When cross-linking came to Australia, I was fortunate that my corneal specialist was one of the doctors who ran the trial phases, so I was able to have the cross-linking done as soon as my Keratoconus starting progressing at quicker rate in my left eye. As quick as he was in doing it, the treatment came a bit too late and my Keratoconus advanced quickly in the weeks leading up to the treatment and due to the thinness of my cornea I am unable to undergo the cross-linking again.
Two years ago (12 years post first corneal transplant) I noticed my right eye was swelling around the lid, and was very red. It was hard to determine my vision as even after the graph I was never able to gain vision in that eye. I had began rejecting the cornea and after months of hourly hour drops (even at night) my specialist deemed that he was unable to stop the rejection so 6 months ago they replaced it with another full thickness transplant. Two months ago, even though I have been extremely careful since my transplant (not allowing water near the eye, wearing safety glasses, nowhere near dusty places, not doing anything that could harm the eye) I was washing my face with a facecloth with cleanser when a large clump of cleanser fell from my washcloth and into my new cornea, of course. After being rushes to hospital and having a few litres of saline flushes through my eye I was left with a swollen cornea, and the unfortunate realization that any vision I had regained in that eye which was splotches of color had disappeared with no guarantee it would return.
During this time, my left eye must of decided it wasn't getting enough attention from anyone so decided it would start to progress as well. I have not driven a vehicle since March 2017, which makes it a year of losing a bit of my independence. I have found the journey difficult at times and also very hard for people to understand it. Going to the supermarket is no longer a quick journey, walking down the street by myself is no longer much of an option as I have continuously walk into things including oncoming traffic.
My corneal specialist and optometrist are two of the most patient people I have ever met. Through the ups and downs and my own tears of seeing my vision and independence leave me, they are always there for me as well as my partner and my family.
In a few months I am going to be fitted with a Keraring in the left eye to hopefully improve my vision and if it is not successful they will proceed to do a cornea transplant in the left eye.
The journey is long, however I am still young and have hope for the future and that medical advances will allow me to have more vision which will allow me to travel and drive and walk down the street again!
Chloe-Angie Davies (@cadcam_)