UK Keratoconus Self-Help and Support Association

Hi All

This is the first time I am posting and am after a bit of advice.

My wife and I both have KC. Mine is not too bad. My right eye is so far unaffected where as my left eye can be controlled with glasses (just). My wife's is worse and we have been to various places to have RGP and such like to be fitted but not much luck. Her eyes just seem to be ultra sensitive. I have 3 questions that if any one could help me with I would be very grateful. As I believe experience so so valuable and you guys are the best from what I have read.

1. My wife and I are 36. Will KC still progress for us or is it stable now. Mine has not got any worse in the last few years and neither has Nadia's. (Thank God)

2. We have 3 gorgeous boys (16, 13 amd 7). What are the chances of ours boys getting KC.

3. Would there be any experienced Optomotrists on these boards who would be willing to try and fit our Nadia for contact lenses. Obviously we would pay the going rates etc. We live in Bucks and would be willing to travel around if needed.

Thanks very much for al your help and advice.

Shak

Shak,

Welcome to the forum!

I am sorry that you and your wife both have keratoconus. So far as I know you are the only forum members who are a married couple each with keratoconus.

Let me offer my own take on your three questions:

1 It is known that Keratoconus does stabilize. Indeed I kind of hoped this would happen for me when I turned down the offer of surgery at an earlier stage in my own condition; sadly my KC did continue to progress. So, while KC does often, or even usually, stabilize in the patient's mid thirties, this does not always happen.

2 Certainly your oldest son is now at the sort of age when, if he was going to develop keratoconus, it might be expected to begin to appear. There is no automatic 'hand on' of keratoconus from parent to child, but I do not know that there is too much experience of your situation to be able to offer any dependable prediction of the likelyhood of a child inheriting a gene that may be implicated in keratoconus where both parents are sufferers. I'd say, keep an eye on them (no pun intended), but do not panic.

3 Not my field, I am afraid.

All the best

Andrew

Husband & wife with KC!
What are the odds of that?

Hi Shak

There are herditary factors involved in KC, but as Andrew said, its not a straightforward "transmission" issue, so no-one can really tell you what the odds would be. With both of you having KC, the risks could be higher and it is best that they are all checked annually by an optician.

As for fitting lenses to Nadia, have a look on the "KC friendly optometrist" page here to find ones in your area.
http://www.keratoconus-group.org.uk/optoms/index.php

Any optometrist would need to know Nadia's history and what lenses she has tried before saying whether they think they could help, so a little more background would be useful!