UK Keratoconus Self-Help and Support Association

Hi everyone,

Wow, there is a lot of useful information on this forum, but quite alot to take it, so not sure where to start!

My son is fifteen and has been having difficulties with one eye for at least a year, just last week it was confirmed that he has KC. I had never actually heard of KC and really don't know where to start researching. Basically very little info has been given by the specialist, and the only course of action we were told is that he needs contact lenses. The vision in his eye is really quite minimal.

Although I have tried to read up a little, I feel really out of my depth considering I only actually heard of this condition until one week ago.

However, I am not happy with the info/support received from the hospital, I have noticed that some people on the forum are discussing alternative treatments available privately such as
Corneal Collagen Cross-linking with Riboflavin (C3R)

I would be really grateful if anyone could share their advice on this issue. I just feel that if something could help and is not available on the NHS I would like to know.
My questions are as follows: Are there any private medical treatments I should be looking into?
I live in Manchester, could anyone recommend a reputable private clinic where I could just get a consultation? So I could at least make an informed choice.

Is there a national organisation which could send me a list of reputable clinics?

I feel really alarmed that no information regarding treatments was provided to us, when asked what options were availabe we were told lenses and if we are not happy we can have a second opionion.

If anyone could share their experiences regarding treatments (ie what was offered on NHS and if they have tried alternative treatment and the outcome).

Sorry for dragging on!
Many thanks Lulu

Lulu,

Hello and welcome to the forum

I think you will find that no surgical treatment options were offered because of your son's age. From a surgical point of view, I recall Mr Daya at the conference saying that they don't operate on anyone under the age of 18.

Please remember that as yet there is no miracle cure for KC, and that some treatments such as C3R are still pretty much in the research stage of development. Although C3R is becoming more widely available privately, it is not generally available on the NHS. Further to this more clinical study is needed to determine the long term prognosis of this treatment, but the early data is encouraging. Even INTACS in this country is relatively new and the data available is not as great as that in the States.

Again, going back to your son's age, KC tends to develop at it's most rapid state during mid to late teens before finally straightening off by mid 30's. It is possible that your son's consultant wishes to adopt a wait and see approach in order to determine how fast and to what severity your son's KC develops, this will help determine what the appropriate treatment will be.

Certainly get a second opinion if you are not happy with what you have been told, whilst there can be no guarantees that the outcome will change there is the possibility. I did this on my first consultation at St Paul's and found the consultant's opinion to be completely different to that of his junior registrar.

Hi Lulu and welcome!
Just to add a 'health warning' about the stories you read on this forum. A lot of the people who come here post because they're having problems with their KC, so it's easy to get a distorted view of what keratoconus involves. We tend not to hear so often from people who are doing fine! We have lots of members who were diagnosed with KC in their teens and are still doing very well in contact lenses 30 or 40 years later, without the need for any surgical interventions.
There are more options for KC now than there were even a few years ago, and the next year or two will probably see them becoming more widely available on the NHS as more research is done. But it's important to remember that KC often progresses very slowly and not to think that rapid deterioration is the norm. So do bear that in mind as you investigate all the options.
As well as the website, we have a postal mailing list for UK members so if you'd like our basic information booklet on KC and would like to be on the list for future information (including a DVD of our 2007 conference which covered some of the new options and will be sent to all our postal members later this year) do e-mail me
anne@keratoconus-group.org.uk
Anne

Hi Karl and Anne

Thankyou very much for your replies. My mind has been eased a great deal after reading your replies. It is easy to get a distorted view, when you read so many sad stories, and its very reassuring to know that many people carry on with life in a normal manner.

Thankyou very much for taking the time

lulu

lulu wrote:Thankyou very much for taking the time

lulu

You are welcome, that is what we are all here for, to share experiences both good and bad.

As Anne said, there is a tendency to focus on the negative aspects of KC as few post on the positive. There are few positive aspects to having KC in itself, but there are many in the treatments available and the support that fellow KC'ers can give to both newly diagnosed patients and their families outweigh most negative aspects.

To the uninitiated KC can be daunting, but with the right advice and support it does not become a problem. I have said many times before and probably will say many times again that in my opinion KC patients are of stronger character than most non KC people because of the challenges KC presents in life and how we overcome them. I am also of the firm belief that you run your KC life and not let KC run your life.

Please feel free to ask any questions you may have at any time.

Karl

Lulu

Just wanted to add my welcome to the forum.

All the best

Andrew

Lulu,

Just wanting to say welcome and hoping that you can find a lot of good help and advice here. As Anne said a lot of people post here because they have problems, but there are many people with KC who manage really well and do not post.

I am doing very well now with KC, but have had many problems along the way with lenses. I have now had a graft though and my vision is so much better! It is taken two years to get my grafted eye to see well but it has been more than worth it!

Hoping that your son gets some good lenses soon, love Sweet X x X

Hi Lulu

Yes there is a danger of information overload! Just picking up a few of your points. In the UK, as Karl said, children are not generally operated upon for many reasons. In the UK now we have very strict ethical restrictions on what treatments children get. Hospitals have to now supply a full paediatric suite for them, so costs are an issue as well. Children are operated upon in other countries.

Treatment via NHS will also vary from PCT area to PCT area - so this is yet another factor.

National Register of practitioners - well you would think so wouldn't you? But in actual fact there are no official statistics for KC in the UK or really any other country and no registers of practitioners.

However, we are doing the next best thing here on this website - if you go to http://www.keratoconus-group.org.uk/optoms/index.php you will find our list of practitioners willing to accept KC referrals. This is by no means inclusive and does not constitute any recommendation as the people on this list are self referrred. Think of it more like a Yellow Pages seciton! The list is growing all the time.

If you have any queries you would like to discuss with me as an optometrist, you can email me on lynn@keratoconus-group.org

Lynn

Hehe Lynn thanks for that! I was going to get the link for the optom list later!

Lulu,

Hi, glad to see you are trying to inform yourself, thats why I come on here too, my H has the condition. Like your son he was diagnosed in his teens.
I just wanted to share my own experience with you, I didn't realise what an impact it had on things until my H got angry and frustrated, I didn't realise he couldn't see to do something but wouldn't ask for help. My MIL says the moodswings are common but she has allowed them to excuse some bad behaviour. Be prepared, sometimes you can never do the right thing, you take an interest, and the don't want to talk about it, you don't ask - mainly becuase I'm too scared of teh answers, and thats wrong too, Its hard but try your best.


My H avoided surgery for 20 years and is now in post-op recovery, waiting to see if the grafted eye will be useful to him and concerned that the good eye is deteriorating.
At least on here you may become more informed of the repercussions of surgery, things that we were not aware of.

Hope that helps,