UK Keratoconus Self-Help and Support Association

Hi Folks,
Ive had a really terrible day. I have had keratoconus for the last 20 plus years and had the usual ups and downs which come with the condition. I now use Rose K lenses and manage relatively well.
However my dread has always been that I would pass this on to my daughters. My daughter is nearly 18 and has just started her first full time job at the Nat West. I knew she was having problems with her right eye but at her last test in May we were assured there was no sign of KC.
However we've been back today to be told that the cornea in her right eye is looking distorted and that she needs to be referred to the eye hospital. I feel physically sick, I didnt want this for my daughter and I feel totally responsible. The optician says there's no sign of any change in the left eye.

I wondered what was available now for people who are newly diagnosed??
I hear a lot of you talking about intacs - What are these???
Can some people just be affected in one eye???
Can your cornea look distorted for any other reason than keratoconus?

Sorry if this sounds dramatic but thats how I feel. Really need some words of support from you guys.
I know I may be jumping the gun as she hasnt been officially diagnosed but all the facts point to the fact that she is developing KC.
I.ve tried to reason with myself saying that she is better off than I was. When I was diagnosed 20 years ago I knew nobody with KC and nothing about it. I know there as been great advances in the last 20 years and at least I.ll be able to guide her through it.
Thanks for listening
Libby (stressed out mum)

Crosslinking:-

http://www.peschkemed.ch/

Intacs:-

viewtopic.php?f=12&t=2194

Libby,

Am so sorry to read this, I am thinking of you both. Yes you can get KC in one eye, my right eye only started showing signs years after with my left.

Don't panic though, this isn't your fault and she hasn't been diagnosed yet. There are many other reasons for the cornea being distorted so please stay strong until she has been seen at the hospital.

Hoping that you get seen soon, love Claire X x X

Hi Libby, I understand how you feel, but you are right that you are in a much better position with your daughter than you were yourself all those years ago.

Prospects for those with KC were reasonable 20 years ago (you managed, after all ) but are much better now. As Stephen pointed out, there is now C3R available to manage (and possibly stop the progression), but you will need a diagnosis before progressing down any treatment routes.

Hang in there, and don't feel too guilty about it. Life happens, and we deal with it. Just be there for your daughter when she needs you.

I know how this feels, and I am sorry that your daughter is having trouble with her eyes.

You are right that it is maybe too soon for you to be diagnosing KC for your daughter, but you are also right that your having it does not confer any immunity on your daughter.

Cross bridges as you come to them. Above all, do not panic. Your daughter has a good role model in her mum and together you will be able to face whatever lies ahead.

All the best

Andrew

Thanks Guys for taking the time to reply.
After a sleepless night I have woken up and decided I am going to be no help to my daughter if I am acting like this. I am going to face things as they come and as I said yesterday thanks to this web site we have lots of support plus 20 twenty years improvements in treatment. I am trying to be positive, but the guilt is still there.
Thanks again, I'll keep you posted.
Libby

Hi Libby

I think any parent feels this guilt if their child develops a health problem - and today's media doesn't help with stories of what mother's should and shouldn't do when pregnant. In the end, you can only live your life as you see fit at the time. Medical science is still not agreed on why people get KC. Although its increasingly clear that there are some genetic elements to the condition, it is by no means as simple as that in that many KC'ers would be hard pushed to find a near relative with the condition.

This has to be taken one step at a time and first you need the medical opinion. Depending where you live, the hospital appointment could be quite quick to a few months hence. If waiting is stressful (as in its often easier to deal with things when you know what you are actually up against), then there is always the option to go privately for the diagnosis. Your GP can discuss this with you if you like but also your optometrist can refer you directly to an ophthalmologist for a private appointment (though they have to go through the GP for an NHS one).

Once you have this, then it is much easier to get information together as to what to do next. Please feel free to PM or email me if you want to talk more.

So sorry to hear your story. This is not your fault. I hope everything works out for you, but if your daughter has KC, she will have at least one piece of luck: a mother who has so much experience!

Dear Libby
As everyone has said take one step at time. and try and think of the postives. you had K.C for a long time so your daughter will be able to come to with her problems. And of cousres you know a lot about it to so you can pass the information on to her. She has not been diganosed yet so just keep calm I know it only took me a month to see an eye consutant so it is not as long time wating as it used to be. And of couse you always have the option to go private. My thoughts and prays are with you both, take great care and hang on in there.

I understand this, everytime I take my son for a routine eye test I am a nervous wreck until I know he is ok
I think the main thing is that you are there for her and if she does have KC you will really know how she is feeling and what its like, she will benefit from your experiences so much.
Try not to worry too much until KC is confirmed xx