I was first diagnosed with KC around 11 years ago, but I really didn’t think that much about it at the time, and it hardly bothered me for the first few years. I used to go for regular eye tests and the opticians would always mention it, but we tend to move areas quite regularly due to work so I hardly ever saw the same optician twice so no one was really monitoring it to notice it getting progressively worse. For about the last three years I wasn’t happy with my vision from my glasses, but then around 12 months ago my sight seemed to deteriorate rapidly and I finally decided it was time to do something about my Keratoconus so booked myself into Moorfields as a private patient.
Moorfields fitted my with RGP Scleral Lenses and wearing them for the first time was like suddenly seeing in high definition, I was really shocked how much more detail I could see, (although some of it wasn’t good – I didn’t realize how many wrinkles I had!) Getting used to wearing the lenses was a real challenge, but eventually I have got used to them and can put them in & out quite quickly now. On a followup visit to Moorfields they suggested I wear glasses over my lenses to help correct some astigmatism and now with the combination of lenses + glasses, my vision is almost perfect again.
I still have some difficult days with the lenses, which can be very frustrating – one day I am wearing them quite happily, the next it is like having a brick in my eye and my eyes become red & watery. It is so frustrating because there doesn’t seem to be any pattern, but you can almost guarantee it will happen on a day when I am doing something important and need good vision. I now find it really difficult to go back to wearing my old glasses, as there is such a contrast in vision quality – I can manage fine at home, but work is really difficult if I don’t have my lenses in. One of the biggest challenges is explaining it to other people, a lot of people don’t know I wear the lenses so they just see me in different glasses, so wonder why I’m wearing glasses which I cant see in! I have quite a demanding job, and my employers have been very supportive it is definitely a challenge explaining the seriousness of KC to others without boring them to death, and I do sometimes get the impression that people think I’m making a drama out of wearing contact lenses because they just think of the standard disposable types.
I was also diagnosed with Blepharitis (swollen eye lids) which at least explains some of my bad days with my lenses. I need to bathe my eyes with a hot towel every day, and use a special foam to massage my lids – this can be a real pain to do, but it does make a big difference when done every day.
I am due to go back to Moorfields in a few weeks to check if my Cornea’s have thinned anymore since my first consultation. My left eye is extremely thin already, but my right was holding up quite well so we now need to know if it has stabilized or if I should consider crosslinking to strengthen it.
Overall I still finding living with KC to be a challenge, but I have managed to adapt to it quite well and I am very thankful for the vision I get from my lens + glasses combo. My only regret is not managing it better for the first ten years, and so I would encourage anyone who is newly diagnosed to be proactive with getting the right treatment early on – don’t do what I did and just think your vision is fine so you can just ignore it, unfortunately this disease is progressive so cant be ignored away!