Newly diagnosed with KC - at a loss of what to do next

[chris7197]

Hi all,

I'm a 26 year old male who works as a software developer. I've always regarded my vision has perfect - I had an eye test when I was about 16 in which I had greater than 20/20 vision.

Back 3 years ago, I somehow noticed that if I cover my left eye on my vision is very, very blurry, for both long distances and short distances. This was a real surprise because I still regarded my vision as perfect - I've never had any issues at all. I then went for an eye test, who said my right eye had fairly bad astigmatism and I would need glasses for my work, which I had.

Due to the extent of the astigmatism, I was followed up every year, and my astigmatism had gotten significantly worse every year. Most recently at the end of 2014, my optician told me I may have KC and referred me to the hospital.

I had my appointment with the consultant yesterday who confirmed this and told me that my right eye's cornea is heavily scarred and is completely beyond repair and the only option down the line is a cornea transplant. I had guessed this may be the case but hearing that is pretty scary! My left eye however still has fantastic vision, but is showing early signs of the disease. This is the hardest thing to come to terms with as my day to day life completely relies on my left eye, and if that starts to degrade I can't see myself working as a software developer. Not only that but my fiancee is due to give birth in October to our first child, and the thought of not seeing him growing properly is devastating.

My consultant has referred me to a contact lens specialist within the hospital to see if that can help with my right eye, but he has said the only treatment to halt progression of the disease is CXL, which I had researched prior. Unfortunately where I live (Wales) this is not available on the NHS and the only advice he had was to either go private or reenquire at my follow up appointment in a year.

I have been saving up for the arrival of my son, and now I'm forced to decide whether I need to use that money to have private treatment or not. I'm guessing CXL would be useless on my right eye, but if it has a chance of halting progression of the disease then having the procedure done to my left eye is my only choice. Is CXL worth it? How much did you guys have to pay?

[Anne Klepacz]

Hi Chris and welcome!
Many people have one good eye which is hardly affected with KC and so don't realise how much the 'bad' eye is changing because the brain just ignores that one. And the second eye often progresses much more slowly. Hopefully a contact lens in that eye will improve the vision considerably. Bad scarring probably does mean that CXL won't be possible for the bad eye. But it may never get to the point of a corneal transplant. If it does, it's not the end of the world! I was diagnosed with advanced KC long before CXL was invented and had transplants in both eyes in my 30's. Apart from a few weeks off work post op each time, I continued to work full time before and after the transplants.
As for CXL, I'll leave the guys who have had it done to reply re timing. It isn't available on the NHS in many hospitals yet and I think devolution makes it harder for you to be referred to an English hospital. Though if you're in North Wales, I do know some people have been able to have CXL done on the NHS at St Paul's Eye Unit in Liverpool. And does the fact that your consultant suggested you could re-enquire next year suggest that he's hoping they will get funding to do it on the NHS then?
Privately, average costs are £1500-2000 per eye I believe.
If you'd like our info (booklet, DVDs, newsletters) then e-mail your postal address to anne@keratoconus-group.org.uk and I'll send it to you.
And congratulations on your impending fatherhood!