A cautionary tale

[daarklight]

Hi everyone - I'm new to the forums but am a long time KC sufferer.

I was diagnosed in 1995 at the age of 23. I was serving in the British Army and had just returned from a tour in Bosnia when I noticed that my vision had become worse and worse. A trip to the Opticians led to an appointment at the Military Hospital in Woolwich and confirmation of KC. My condition led to me leaving my career in the Army and I was referred to Moorfields Eye Hospital in London for Gas Permeable Lens fitting and annual appointments thereafter.

My KC stabilised by the age of 30 and I was left with a reasonable level of vision without contact lenses. Due to discomfort with the lenses I buried my head in the sand and stopped wearing them and also cancelled my hospital appointments as I thought I could 'get by without them'. I was able to see adequately to get me through daily living and I developed strategies to get me through other situations.

I recently embarked on a course of study at the age of 37 and it has now been brought home to me how foolish I've been in not following treatment options. Little things like walking into a large common room and not making out the faces of friends so I end up sitting away from them and being accused of being anti-social. Sensitivity to glaring lights. Not being able to fully make out course notes or scribblings on the whiteboard. Not being able to read subtitles on a large screen TV. I could go on. I've gone back to my GP and have been fortunate enough to get another referral to an Eye Clinic. Needless to say I will be following any treatment regime to the letter.

If I could give any advice it would be these 'nuggets':

1. Attend your hospital appointments even if things are going well for you and you feel on top of the condition. Monitoring progress or lack of progress of the condition is vital.
2. There are options to combat lens discomfort including refitting and piggybacking onto soft lenses if needed. Don't simply stop wearing them.
3. Talk to someone. I was embarrassed and a little bitter about my condition as it cost me my Army career. Groups like this are invaluable for advice, support and just for 'being there'

So there you go. I've been foolish and naive. I just hope that this can help others to learn from my mistakes and do the right thing.

Mike

[Anne Klepacz]

Hi Mike,
Welcome to the forum and thank you for the sound advice! I hope things go well for you now that you're back in 'the system' and that you'll be able to take full advantage of the course you're doing. Have you found the leaflet 'supporting students with KC' that you can download from the home page of this site?
www.keratoconus-group.org.uk/sitev3/publications.html
Might be useful to give to your tutors.
All the best
Anne

[daarklight]

Thanks Anne!

I had a meeting with my tutors on Thursday and took the 'Supporting Students' leaflet with me. It certainly helped them to understand the condition and how it affects us all day to day. The University have been amazing and put in place a number of adjustments that will help me out.