As many people who know me know I suffer from a condition called keratconus. Recently I was asked by some people who have been diagnosed how it works for me. This is what I wrote to them.
For me Keratoconus has generally been a quite big nuisance. I am very lucky that I have had access to a world class optomotrist in Christchurch called Michael Curtis who also owns the corneal lens corporation which is part of his clinic. Most of the Rose K type lens or copies of these are made in his lab. Michael tells me he has about 200 clients in the South island but has been reducing his focus as he moves towards retirement, I fret sometimes what will happen when he finally stops as I have not found another optomomotrist in NZ anywhere near as good. His patients are generally the more severe cases – lucky me! In many ways this is lucky, as was the fact that keratoconus didn’t really affect me till my early 20s after I had finished University. I do look back in hindsight and realise that I should have been seen to earlier but didn’t pick up that my sight was going. It may have made a difference to my grades at University or my ability to get to higher places in my sporting desires.
Michael tells me that I am one of his more unusual patients. Many choose to become victims to their condition. In the US I have read that many sufferers of keratoconus do not have access to the same level of care we do and simply become welfare beneficiaries. I am aware of some who do this in NZ too, given my role today and historically I think this is more than wrong.
I wear hard contacts with a gray or green tint. My eyes get sore and tired often. I get headaches and tired frequently from it this sometimes makes me quite grumpy. The best solution is when this starts to happen to plan 15-30 minute slots to sit or lie down with your eyes closed, I find this is best way for me to pass the time on planes – the danger is not to fall asleep! It is hard to explain to others as they don’t understand what is going on. It is important I think to also get your family checked as it is often genetic in nature.
My eyes are very sensitive to bright light and this causes some grief to me at the many functions we must attend and in front of cameras. My contacts are also very sensitive to wind and dust. As with most keratoconus sufferers balancing a lens on a very sharpely pointed eye is tricky. I have lost countless numbers of lenses over the past 10 years which I must admit has been rather expensive when they are costing $500 each! Not to mention how many of my friends have laughed at me crawlling on the ground looking for one. We are lucky we live in 2010 as prior to 1990 there was no solution available to patients. Also sometimes I can come across clumsy by taking lenses out of my eyes simply because my eyes hurt so much and it looks otherwise like I have been crying for hours. My eyes are often itchy too. I have been wearing Rose K type lens now for over 15 years and was one of the earlier take up patients.
I have a pair of glasses too that Michael developed for me that allows me to read the paper in the morning and delays the need to wear contacts all day, this helps to reduce the problems above. But glasses can’t be made that allow me to read normally or drive.
The other aspect for me is that I am a bit of a sport nut, I love water and ball sports and used to do a bunch of rather extreme outdoor things. I can’t do these anymore as simply can’t see and trying to climb mountains or whitewater kayak with the issues of my contacts above is rather life shortening for me and for anyone with me.
That being said despite having -16 in one eye and -11 in the other I still pull off a passable position in the Parliamentary rugby team, just don’t ask me to name who is who in the team during the game.
Would I rather I didn’t have keratoconus? Yes, but I don’t let it rule my life. |