New (son has Keratoconus)

[mwana]

Hi Annie

Greetings from Canada - I recently joined this forum when I was trying to find options for my right eye which had suddenly become uncomfortable like your sons'. I have found the forum very helpful although I havent posted a response in a while.

First and for most - take courage. The problem with too much information is that you can get very stressed but there is hope. That is the first and most important thing... live in hope. I was diagonised with keratokonus when I was 19 just as I was going to University in Nairobi (Kenya - East Africa). We didnt have a public health service there so I didnt have all the options available in the UK. I wore rigid lenses for about two years and had my first corneal transplant when I was in my second year of campus I think. I had my second transplant when I in my final year (its such a long time ago now I cant remember properly). Both my transplants were done at a local missionary hospital with grafts coming in from donors in the US. I guess what I am saying is that you can live happily with the transplant if it comes to that... I have had mine now for 20 years.. I turned 40 this year. I still have to wear Rigid Gas Permeable lenses for the vision but the graft is still intac. So again - there is hope. Encourage your son not to despair.

I moved to Canada in April this year and I am still looking for the 'perfect' lens for my right eye. In the meantime I take it out all the time and wet it through the day to reduce the discomfort.

Mwana

[cclman]

Annie

In all your replies to people on the forum re your sons KC you have not metioned ccl/cxl as treatment for your son!! do you not know that maybe this is the first step in dealing with his KC People have treatment all over the world and this board is visited by people from other countries (not just the UK), have faith the advice here is solid and real. Talk to him or he should talk to his optician/eye doc about ccl/cxl - I can't stress this more to you. Good luck to him.

[GarethB]

A point to remember about CXL, the cornea must be above a minimum thickness before it can be done. Plus it locks the cornea into shape, so if your son is having lens problems, CXL on its own may not fix them.

Like most things these need to be discussed witha consultant on a case by case bases.

For example my corneas are an ideal candidate for CXL but for one thing. I have a graft in each eye and the proffessionals are so unsure what might happen to the graft they will not do CXL on the host corena where the KC has returned.

Unfortunatly with this condition things are not straightforward. Take on the ideas and then discuss with your consultant.

[cclman]

A point to remember about CXL, the cornea must be above a minimum thickness before it can be done. Plus it locks the cornea into shape, so if your son is having lens problems, CXL on its own may not fix them.

Like most things these need to be discussed witha consultant on a case by case bases.

For example my corneas are an ideal candidate for CXL but for one thing. I have a graft in each eye and the proffessionals are so unsure what might happen to the graft they will not do CXL on the host corena where the KC has returned.

Unfortunatly with this condition things are not straightforward. Take on the ideas and then discuss with your consultant.

Interesting.... It would be interesting to know what the thickness of his corneas are? I agree, its important to discuss it with the consultant- but not all expalin and not all offer solutions. Mine did not do any explaining or warn me of the after effects of ccl/cxl. I think some take the attitude I'm a doctor (eastern europe training) (or "specialist", UK training) this is how it is.. sign here, while others will have a human and helpful approach and talk you through KC and what can and cannot be done. Its Luck of the draw

[Annie]

My son and I watched the DVD about the last conference and we learnt such a lot. We also went to see the optician that diagnosed him in the first place and she gave us some more information. She didn't know about this support group, so I told her about it and no doubt she will join.

My son is to see his optitcian at the hospital on Wednesday and the other optician has told us what to ask. She also said that my son should demand to see his consultant as he hasn't seen him for about a year now. She said one eye is very advanced the other is just worse than mild.

I am going to go with my son to the hospital to make sure he asks the right questions etc.

I was amazed at how bad his eyesight was too.

Annie

[rosemary johnson]

Best of luck at the hospital on Wednesday!
(I have a hospital appointment Wednesday, too - I shall think of you both when I'm sitting in the waiting room!)
It's amazing how, with a condition that gets slowly worse, we don't realise how far it has gone until there's something that jolts us.
Rosemary

[Andrew MacLean]

Annie

You say that your son is going to see an optician in the hospital. Has he not seen an ophthalmologist? I know that the names of eye-care professionals can be confusing, but an ophthalmologist is a medical doctor who specializes in the eye.

Andrew

[Annie]

Hi Rosemary, best of luck to you too. I will be thinking about you when Simon and I are sat waiting.

Hi Andrew, I think Simon is seeing the ophthalmologist. I know the person he is seeing is the top man under the consultant. Our optician said you can get no higher than this man at our hospital, whatever that means. We are hoping that we will be referred to the consultant too.

I will let you know how he gets on tomorrow. I am armed with a little more knowledge than before, so I should at least understand what is said!

Annie