UK Keratoconus Self-Help and Support Association

i took my 15yr son for his eye test.
they diagnosed him with KC. I was stunned i didnt know it was hereditory.
i feel soooooooo guilty that i have passed this on. Well im guessing i have it cant be a coincidence surely????????

hes not speaking to me now either. I*m waiting for him to chill so we can talk. But wot do i say. ?

I'm sorry to hear that. I have a few people in my family who have KC too. But I never knew they had it till I was diagnosed. Don't feel guilty, its not your fault! Don't worry about it, he probably just needs some time to think about it.

Good luck and all the best.

You must not feel guilty at all! It is not your fault!

We think our 25 yr old son may have it too (I'm waiting for him to get it checked out) but when I talked to him about it he was so good and said he had inherited so many good things from us that what did a non-life threatening condition matter! I am sure your son has some really good things he has inherited from both of you too - get him to look at those.

He is obviously very worried because he has seen you suffer and he won't want the same - but it may be very different for him too. He may only have it mildly, it may stabilise early, but at least he knows and can be treated and carefully monitored.

Of course he is angry now (but not with you really - more with his fate) and probably very confused and scared about his future - but bear in mind that he's also at that really difficult age where his body and mind is going through enormous change. He will be fine - just give him a little bit of time, and in the meantime just comfort & support him and be there for him as best you can - and be prepared for the odd bout of rejection! If you can try and get him to focus on the positives - at least you will understand how things are for him, and you will be able to answer his questions as you have been through it. I have found one of my biggest problems is not having someone around me who understands what it is really like! So he's lucky having you isn't he!

Thinking of you - and try not to worry to much (easier said than done I know!)

Hi there,

Sorry to hear that your KC is now "in your family".

It seems that there is an element of KC that is inherited. Just because you have KC doesn't mean your children will get it by any stretch of the imagination.

Basically, current thinking is that you have to have the right genes for KC which give you a susceptibility to the condition, then something else has to happen to actually kick-start KC. Nobody knows what the trigger is though.

It also seems likely that both copies of the chromosone need to be faulty before someone gets KC. So if you have KC and the father doesn't, then there may be a 50% chance of your offspring having KC, and only a 25% chance that your grandchildren will even carry the KC gene.

In the studies that we were shown at the 2006 AGM, there was only a tiny incidence of KC at the third generation. If anyone in your family therefore (parents, grandparents etc) have KC, then the risk of your other children having KC is much smaller.

I'd suggest having your children's eyes tested as the earlier KC is spotted the more chance that something can be done to slow the progression.

I'm sure that your son will soon realise that KC isn't the end of his life, and knowing early is an advantage. He'll then be asking you lots of questions. Get him to sign on here if he prefers it.

All the best,

This must have been a shock and will probably take some time to sink in.

Hopefully you will be able to help each other. 15 is a very funny age and I expect he feels as if his life has ended before it has even started. Hopefully once you get some time to talk and he is ready to listen he will realise this is not the case. I am 40 next year and was only diagnosed at 33 however it was still a real big shock.

take care both of you

Susan

Cherishu,

Why feel guilty?

KC is genetic as John has said, but even in identical twins the condition does not progress the same. Sweet is a prime example. Her KC is far worse than her twin sisters.

Therefore just because your son has KC does not meen he will go through the same as you.

There is a Midlands meeting on June 9th at Birmingham & Midlands Eye Centre. Bring the whole familly, I am sure the ladies present will find the presence of a new born baby just the distraction they need form the KC.

John Smith states

the earlier KC is spotted the more chance that something can be done to slow the progression.

I´d be interested to know what can be done. Could you elaborate on that John.

"Slow the progression" wasn't the best choice of words on my part. Sure, there is C3R for that, but I understand that C3R isn't carried out on minors yet.

I was really meaning that the earlier the better in terms of wearing lenses and getting vision, as there is more chance of a more simple lens doing the job.

KC does not have to be a hereditory condition for a mother and son both to have it. It mayb e that shared environmental factors are also at play. Still, I am sorry to hear that your son has also been smitten.

There is, of course, absolutely no reason for you to feel guilty. Even if KC were an hereditory condition you could not bear any "blame" for your son's condition. Since the choice would be between not being on the one hand or being with KC, on the other ask yourself this: would you prefer that your son had not been born at all, or that he was born with the potential to develop KC?

For my part I am grateful every day for the life I am able to live and I even sometimes find my self enjoying the ingenious little strategies that enable me to manage my condition.

Tell your son that he is in our thoughts and has the best wishes of us all.

Andrew