UK Keratoconus Self-Help and Support Association

Hi everyone, can you help me with understanding this one....
My brother has had loads of eye problems and tells me he has had KC since he was about 20. The reason I am bit vaugue about is because I was at sea for this part of our lives and I missed a lot of stuff. His is pretty bad and he has to wear lenses and glasses. The problem is my brother is prone to misunderstanding people and going off at a tangent so I am now not sure how much of what he tells me is probable, what is just bad advice and what he has misunderstood. So this is what he told me:

He says he has some really weird type of KC which has resulted in his corneas being concave and sagging inwards instead of outwards. He says it is so rare that they took images for the text books.

Various lenses , glasses combinations have been tried but not to any great success and he is either borderline for driving or below standard even when corrected.

I also asked him about grafts and he said they would not consider until he was 45 (he is 35 now).

So he is basically just getting on with it for now. But I was surprised by that information; I have seen grafts done on toddlers on the TV.

A lot of what he has said doesn't really make much sense based on what I seen and read here.

I would like to advise him to get back to his opthamologist and get treatment re-started because there seem to be more options than there were 15 years ago when he got this advice.

My brother doesn't like to linger on details, he is a "get on with it" kind of guy, but that means he may not have got the best advice. Sadly I was away and couldn't help him then.

Does anyone have any ideas on this? There seem to be so many angles on KC that he could well be correct but you guys could provide some context for me?

Matthew,

Amongst the slides that Ken Pullum showed us at the conference last year was an example of a concave KCer.

Unfortunately, that's all I can say on the matter.

John

p.s. the DVD of the conference is now complete, and "only" needs to be duplicated. Watch this space for more information.

Matthew

Your brother is right about his "concave" KC being a rare variation of the condition. I am not surprised that they wanted to take photographs for their records, or even for the text books.

I am a bit surprised about the decision not to proceed to a graft until he is 45. It would do no harm for him to ask to see his ophthalmologist again and even to ask for a second opinion.

Where is he seen by an ophthalmologist? In Scotland?

Yours aye

Andrew

No, he lives in Birmingham. I am actually English from Essex originally but lived all over the country. Decided to settle down in Scotland, I love the hills!

Birmingham eye unit is excellent and it sounds very unlike them to say no graft until the age of 45!

I know the specialist I see in Coventry also works at Birmingham and he is very good at explaining why a graft may not be suitable for someone.

Your brother is quite correct the form of KC he has is quite rare.

Matt

I am in Port Glasgow, and have a better view of the hills than you, although you porobably don't have to drive as far to start climbing them!

Birmingham is a pretty good hospital. I'd go back to the ophthalmologist and ask him to look again at possible treatments.

Andrew

Thanks a lot guys, I needed to get facts straight before I went back to him. I will see if I can get him to contribute to the forum as well as get a second opinion.

As far as hills are concerned, Andrew you are right, you can't see much from Helensburgh but I can get out into Glen Fruin every morning with the dog. I also go over to Port Glasgow quite often with work.

Nighbours!

I know where to find you, next time I'm the other side of the water!

Matthew, thats really interesting to read- never heard anything about it before.

Oh and Glen Fruin is a beautiful place- one of my favourite places!