UK Keratoconus Self-Help and Support Association

Hi I'm new to this , my 13 yr old son has just been diagnosed with KC and I'm scared , he suffers with really blurred vision , he was fine 12 months ago at his last eye examination and has never needed glasses , does it normally happen so quickly , he has been referred to get hard contacts , will these prevent anymore long term issues , will the eye condition get worse , would appreciate any info , thanks

Danielbell05

Welcome to the forum.

Keratoconus can progress very rapidly, and then it can stabilise and after a bit (sometimes lasting many years) it can progress again. There is no fixed pattern that the condition will follow in every case.

It is so usual that it is almost routine for the first response to keratoconus is for either glasses to be prescribed or contact lenses. I'm not going to give you a list of other treatments, therapies or management strategies that can follow, but it is important for you to remember that keratoconus can be managed; the overwhelming majority of people with KC never need more than the initial response of glasses or contact lenses.

Every good wish, and remember; don't panic!

Andrew

Daniel,
Just to add that if you would like more information, if you e-mail me your postal address I can send you our information booklet about keratoconus and the DVD of our 2009 conference which covered the options for the condition in more detail. anne@keratoconus-group.org.uk
Also, if your son's eyesight is affecting his school work at the moment, do download the leaflet 'supporting students with keratoconus' from our home page www.keratoconus-group.org.uk/sitev3/publications.html and give it to his teachers.
Anne

does it normally happen so quickly?
It varies from person to person, and even then it goes through fast and slow spurts.

he has been referred to get hard contacts , will these prevent anymore long term issues
Hard contacts should help him see normally. But they aren't a treatment in themselves. (Once upon a time it was thought that hard lenses helped 'push' the eye back into its correct shape, but I don't think that's a popular theory anymore)

will the eye condition get worse
It will probably progress i.e. his cornea will probably get thinner, and more deformed. However, if he already needs hard lenses to see, this won't make much difference to his day to day life. The prescription will keep changing, but his quality of life won't since he's using the lenses anyway.

There's a small possibility that one day it will progress to the point where he needs a corneal transplant in one or both eyes. If that happens, the outlook for the procedure is very positive.

Danielbell05 wrote:Hi I'm new to this , my 13 yr old son has just been diagnosed with KC and I'm scared , he suffers with really blurred vision , he was fine 12 months ago at his last eye examination and has never needed glasses , does it normally happen so quickly , he has been referred to get hard contacts , will these prevent anymore long term issues , will the eye condition get worse , would appreciate any info , thanks

As Andrew said... don't panic

Your son's diagnosis sounds very similiar to mine.
My eyesight was always great, and I NEVER wore glasses during childhood.
Then the KC just came out of nowhere, and within (approx) 8-9 months I was booking myself in for an eye test as my vision had rapidly deteriorated.
It got to the point where I could no longer drive (legally), even though I had only passed my test 18-20 months before.
As we all know, the driving test includes an "eyesight test" which was no problem at all.

I also went down the hard/RGP lens route, and I have had no trouble ever since.
I went private to speed up the process, and as soon as I got the lenses, my life was pretty much back to normal.
I got through the initial "wear in" phase (gradually allowing your eyes/eyelids time to get used to the lenses) and was back on the road in no time.
I have had a couple of lens re-fits since then as the KC did progress and the shape on my cornea changed.
However, I was literally in-and-out for the re-fits and had a new, amended lens ready to wear within 3 weeks.
The lenses won't stop the disease or halt the progression, BUT they will bring your son's eyesight back up to a great level and will make the condition manageable.

As Andrew said, a lot of people with KC get through life using just contacts and/or glasses.
However, once your son has been fitted with his lenses and has got used to wearing them on a daily basis, you could possibly look in to other treatments that can help to stop the KC progressing (you'll be able to find a lot of info on this forum).

Can't thank you all enough for your advice , it just comes as a shock , some things you read off the Internet really scare you , but after reading all your comments it's kind of calmed me as a parent and guess we are just going to have to take it all step by step , my son jake definately does not like the idea of wearing hard contacts , but he is getting very frustrated by the blurring and clouding effects of the KC , it's just progressed so quickly , school are aware now and have been great and really would appreciate the offer of information sending out to us Anne , I will send you my info , thanks again , what a great site this is

Your son does have an alternative to hard contact lenses. He may already have friends who wear disposable contact lenses, so he might be more open to the soft lenses for Keratoconus. The material they are made from belong to the group of soft lenses known as Silicon Hydrogels, they are extremely comfortable and for me give vision that is far better than an RGP lens and I can wear them longer than an RGP and longer than any of my friends who wear daily disposable soft lenses.

The soft lenses for KC are typicaly available in two types of silicon hydrogel material, either 3 monthly disposable or ones that should be replaced every 12 months.

Soft lenses stay in place better than RGP lenses which is worth considering if your son is an active 13 year old in to sports. I used to play rugby while wearing RGP lenses and they would come out and on one occasion I had one break in my eye which was extremely painful. I've never heard of this happening with a soft lens, infact many sport professionals wear soft contact lenses.

I'm called Jake too, and when I was 17 my right eye went suddenly blurry one day. I thought it was an eye infection at the time, but know now it was KC.

As everyone says there are lots of treatment options, and it rarely progresses to needing a graft etc. any question feel free to ask away!