UK Keratoconus Self-Help and Support Association
I write this passage to pass on my own experience of having and living with keratoconus. Although the condition has been for me frustrating and limiting in certain aspects, my personal view is that it has not proved to be a disability and has not prevented me leading a full and 'normal' life.
The first signs of keratoconus came when I was 16 years old. I was playing cricket and I noticed that the colour of the grass was a different shade when looking out of either eye. I visited my GP, who passed me on to the local opticians who then referred me to the Bristol Eye Hospital, who then confirmed that in my right eye only, I had a condition called keratoconus. I was told limited information about the condition. I understood that I had an eye condition that came on with puberty, it was pretty rare and that the level of sight may or may not deteriorate in that eye, and may appear in my other eye. Ultimately I could wear contact lenses to improve the vision. As an active sports person, particularly rugby, I had no problems whatsoever with wearing the contact lens during matches and training.
After gaining my A levels, I secured a place at Loughborough University. The condition in my right eye had worsened but with a re-prescribed contact lens, the vision was corrected. As you can imagine, university life involved long hours, early mornings and a very demanding rugby curriculum. On numerous occasions, my eyes felt dry and tired but I wouldn't say that I suffered from my condition in respect of education, sporting or social life. In 1998, aged 19, the condition had come on in my left eye and I had a contact lens fitted that corrected the vision. Then, the condition in my right eye started to become a nuisance. During rugby, the lens would more frequently 'pop' out and even with a fitted lens, the vision was not of a high standard. The only action I really took to compensate for the condition was to have my computer on my left hand side and I wrote with the paper favoured to my left hand side - you adapt - no hassle.
However, on the last day of my second year of university, it happened. I went to put my lens in my right eye, but it wouldn't go in. I thought the lens was broken or chipped but when I looked at a mirror, my eye had a grey and misty colour across it - I had developed hydrops. I knew what had happened, but it was a surreal moment, particularly as it happened 'in a blink of an eye'. My parents picked me up and drove me to Bristol (where I live and luckily enjoy the proximity of a fantastic Eye Hospital) and visited the A&E department where I was provided with drops and asked to come back to see the cornea clinic on Monday. At that moment, I was at my lowest. I had no vision in my right eye, and had a developing condition in my left. I didn't know how successful the action of the cornea clinic would be. I also had to give up my successful rugby career. Anyhow, things developed and in March 2000 I had a corneal graft on my right eye. I was in hospital for a week and then off work for 6 weeks (I was on my university placement). Over the course of the 7 weeks, the graft proved a success and I had regained vision in my right eye. I had no pain during this time, just slight discomfort. Things progressed with frequent trips to the cornea clinic and I returned to Loughborough to complete my final year. I was obviously conscious and careful of my newly assigned cornea, but my life was not significantly affected by my condition. I passed my exams and gained my degree. I also had a fantastic year's experience coaching rugby at a high level.
With regular visits back to the cornea clinic and contact lens department, I had several stitches removed, which is no hassle - you literally get a local anaesthetic in your eye, then the doctor removes the stitch by surgical tweezers, 2-3 mins max. As things developed, I was provided with firstly a soft contact lens and then a hard contact lens (which I still wear). I still have about a few stitches left in my eye, but they have been left to biodegrade or be removed if they break through.
So where am I now? I'm currently 24 years old and working in Bristol as a Quantity Surveyor on a construction site, having good vision in my right eye with a healthy cornea and a left eye that is currently satisfactory. I have talked about the sequence of events over my life with keratoconus, but what did I feel? What frustrations did I have? Of course, in my lowest moments, I think "why me?" Why not someone else? But 99% of the time you remember that it's happened, you can do nothing about it, so you get on with your life and enjoy it. The main problems I suffer from are dryness, and the associated discomfort and glare of bright lights. I suggest like any other condition, such as diabetes, if you let it get to you, it will affect your life, but if you bear in mind that its just a condition and you accommodate it and also focus on the positive things in your life, whether that may be family or children, friends, social, career, then it may not affect you in such a severe way. It is in my experience possible to lead a full and 'normal' life.
One main influencing factor has been the role of Bristol Eye Hospital whose
administration and abilities are second to none. From stepping into the hospital
as a fresh-faced 16 year old through until now at 24, they have been fantastic.
Every time I visit either the cornea clinic or optometry department I am welcomed
with a smile, seen on time and for however long it takes to ensure that I
have been appraised and treated thoroughly and accordingly. I must give them
the highest praise, particularly in today's climate where it seems the norm
for society to blame and find fault with the NHS. The hospital staff have
provided me with a high level of service in both a professional and comforting
capacity. I must further take this opportunity to thank from the bottom of
my heart the unconditional support and love that I have received from my family
from the age of 16 to current day and for the future. To whom I have unreserved
love and devotion.